Neoplasms

Heart and Blood Diseases

Blood and Lymph Conditions

Immune System Diseases

All Conditions

Rare Diseases

Multiple Myeloma

Neoplasms, Plasma Cell

Neoplasms by Histologic Type

Hemostatic Disorders

Blood Coagulation Disorders

Vascular Diseases

Paraproteinemias

Blood Protein Disorders

Hematologic Diseases

Hemorrhagic Disorders

Lymphoproliferative Disorders

Immunoproliferative Disorders

Participants will be asked to take part in a 30-60 minute interview to understand their treatment preferences. Members of the research team will conduct this either in the clinic or over the phone, as per patient preference.

Participants will be asked to take part in a 30-60 minute interview to understand their treatment experiences and preferences.

Patient Interview

Sally Taylor, PhD

Melissa B Stanworth, MPH

This is a qualitative (interview) study to explore the experiences of people receiving treatment for MM and to understand what matters most to them when making treatment decisions.

People can receive many lines of treatment for multiple myeloma. We would like to understand more about the experiences of people being treated for multiple myeloma including what matters most to them when considering treatment options, how their experiences have differed with different treatments and if they have any treatment preferences. Patients at The Christie who have received five or more lines of treatment for Multiple Myeloma will be eligible to take part in this study. They will be asked to participate in an interview which should take approximately 30 minutes to an hour. During the interview they will be asked questions regarding their experiences and preference for treatment. Interviews will be conducted either in person or over the phone depending on patient preference. The interviews will be recorded by the research team using a Dictaphone and transcribed by an external transcription service called 1st Class Secretarial. The transcripts of all participant interviews will be reviewed by members of the research team and experiences will be identified and described.

PatIent exPeRiences and prEFerence of trEatment foR Multiple Myeloma

The interview will explore the experiences of people receiving treatment for multiple myeloma and understand what matters most to them when making treatment decisions.

The interview will explore how experiences have differed across different lines of treatment and determine if people with multiple myeloma have any preferences for particular treatments.

CellCentric Ltd.

The Christie NHS Foundation Trust

Urinary Tract, Sexual Organs, and Pregnancy Conditions

Uterine Cervical Neoplasms

Uterine Neoplasms

Genital Neoplasms, Female

Urogenital Neoplasms

Uterine Cervical Diseases

Uterine Diseases

Genital Diseases, Female

Genital Diseases

Urogenital Diseases

Female Urogenital Diseases

Pregnancy Complications

Female Urogenital Diseases and Pregnancy Complications

Standard care for cervical screening test (CST) at the midwifery clinic (control group)

Standard care for CST at the youth clinic (intervention group 1)

Standard care for CST at the youth clinic with extra time allotted (intervention group 2)

Standard care for CST at the youth clinic with extra time allotted and the RLP-information (intervention group 3)

Changed clinical context: from midwifery clinic to youth clinic

Changed clinical context

Extra time allotted for each visit for CST

Extra time allotted

Midwife-initiated discussion of the Reproductive Life Plan

RLP-information

Jenny Stern, PhD

The aim is to evaluate different strategies to improve the experience and effect of the first visit for a cervical screening test (CST).

1. How do the context and the allotted time for the first visit for a CST affect women's i) experience of CST ii) knowledge of and attitudes towards CST and cervical cancer and iii) attitude towards contacting a midwife regarding sexual and reproductive health in the future
2. What effects do the RLP have, when used as a starting point for counselling at the first visit for a CST, on women's i) experience of CST ii) knowledge of and attitudes towards CST and cervical cancer iii) attitude towards contacting a midwife regarding sexual and reproductive health in the future and iv) knowledge of and attitudes towards fertility and preconception health

Method: cluster randomised control trial evaluating the effect of different strategies, including RLP-based information, to improve the experience and effect of the first visit for a CST.

The aim is to evaluate different strategies to improve the experience and effect of the first visit for a cervical screening test (CST).

1. How do the context and the allotted time for the first visit for a CST affect women's i) experience of CST ii) knowledge of and attitudes towards CST and cervical cancer and iii) attitude towards contacting a midwife regarding sexual and reproductive health in the future
2. What effects do the RLP have, when used as a starting point for counselling at the first visit for a CST, on women's i) experience of CST ii) knowledge of and attitudes towards CST and cervical cancer iii) attitude towards contacting a midwife regarding sexual and reproductive health in the future and iv) knowledge of and attitudes towards fertility and preconception health

The study is a cluster randomized controlled trial evaluating different strategies, RLP-based information, to improve the experience and effect of the first visit for a cervical screening test (CST). The study will be conducted in a strategically chosen area which includes both rural and urban areas, high and low socioeconomic status and high and low percentage of immigrant visitors. The study is conducted in four steps: 1. Standard care for CST at the midwifery clinic (control group) 2. Standard care for CST at the youth clinic (intervention group 1) 3. Standard care for CST at the youth clinic with extra time allotted (intervention group 2) 4. Standard care for CST at the youth clinic with extra time allotted and the RLP-information (intervention group 3)

Step 2-4 will be conducted during different time periods at the same youth clinics. Recruitment for each step will be ongoing until the necessary number of participants are reached. All participating providers will be carefully instructed during educational sessions and provided with material on how to inform their visitors about the study. The providers at youth clinics will also receive oral information regarding how to execute the intervention and written materials (intervention guide, checklist) to ensure uniformity. During the project period, all providers will approach all adolescents visiting for CST and keep log over the visits to enable analysis of non-participants.

Participating adolescents in all groups will be asked to complete digital questionnaires after their visit. Primary outcomes: knowledge and awareness of CST, cervical cancer, fertility, and preconception health. Secondary outcomes: experience of the visit and likelihood to contact a midwife regarding questions about sexual or reproductive health in the future.

The power calculation is based on results by Stern et al. (2013) showing that university students increased knowledge by 40% after an RLP-intervention. The calculation assumed both greater variety in and lower increase in knowledge among adolescents than among university students. To detect a difference between the intervention and control group with 80% power and with a significance level of p\< 0.05, 50 adolescents are needed in each group. We expect high participation rate and plan to recruit 75 adolescents in each group, i.e. 300 adolescents.

Strategies to Improve the Experience of Gynaecological Screening

The First Visit for Gynaecological Screening - How do we Make it as Valuable as Possible?

The outcome is measured through self-reported data, collected through a digital questionnaire. The items are developed based on Kvalitet Ur Patientens Perspektiv (KUPP), which is a widely used measure within Swedish health care to measure PREM- Patient Reported Experience Measures

The outcome is measured through self-reported data, collected through a digital questionnaire. The item is developed based on previous research regarding knowledge of and attitudes towards CST and cervical cancer. The item is posed as 13 statements and the respondent is asked to tick the alternative that apply to her opinion: highly agree, partially agree, neither agree nor diagree, partially disagree, highly disagree, don't know.

The outcome is measured through self-reported data, collected through a digital questionnaire. The item is formulated as the following "If you have questions about sexual and reproductive health in the future, how likely are you to turn to...midwife at the youth clinic? midwife at the midwifery clinic? nurse/doctor at the health center? 1177/UMO/YOUMO?" With the response alternatives: Very likely / Fairly likely / Neither likely nor unlikely / Fairly unlikely / Very unlikely

The outcome is measured through self-reported data, collected through a digital questionnaire. The item is developed based on the Health Belief Model and previous research on knowledge of and attitudes towards fertility and preconception health.

Sophiahemmet University

Sormland County Council, Sweden

Uppsala University

PhD, Associate Professor

Eligible patients will be matched to complete questionnaires in their specified preferred language. Questionnaire patient responses will also be in the patient's identified preferred language, and will be translated into English for study analysis by UHN Interpretation and Translation Services. The questionnaire will comprise of sections in multiple choice and free-text format, administered in an outpatient setting. Question domains will encompass patient demographics, comprehension of diagnosis and treatment, clinical trials, palliative care and overall experiences in the clinic from the perspective of a CALD oncology patient, including identification of any barriers to optimal care.

Interpreters will be screened by investigators and approached for their willingness to complete the questionnaires. The questionnaire will comprise of several sections in rating scale and free-text format. Questionnaires will be delivered in English only. Question domains will encompass demographics, professional background, and overall experiences in the clinic setting from the perspective of a professional team member caring for the oncology patient with CALD background, including identification of any barriers to optimal care.

Cancer Care Professionals will be screened by investigators and approached for their willingness to complete the questionnaires. The questionnaire will comprise of several sections in rating scale and free-text format. Questionnaires will be delivered in English only. Question domains will encompass demographics, professional background, and overall experiences in the clinic setting from the perspective of a professional team member caring for the oncology patient with CALD background, including identification of any barriers to optimal care.

Questionnaires will be given to patients, interpreters and cancer car professionals with aims of delineating the attitudes and experiences of patients, interpreters and cancer care professionals involved in the care of oncology patients with gynecologic malignancies

Questionnaire

Crystal Wang

Stephanie L'Heureux

Purpose of this study to delineate the attitudes and experiences of patients, interpreters and cancer care professionals involved in the care of oncology patients with gynecologic malignancies with cultural and linguistic diversity backgrounds, in addition to highlighting any barriers to optimal patient care through questionnaires.

Approximately 45% of Toronto residents have a mother tongue other than English, and over a quarter of people speak a language other than English most often at home, with over 180 different languages and dialects spoken throughout the Greater Toronto Area. Additionally, based on the census data from 2016 there also appears to be an unbalanced distribution between minority background and socioeconomic status, with lower income neighborhoods being primarily occupied by visible minority populations, which has been associated with lower socioeconomic status and poorer health literacy, and potentially correlates with healthcare service utilization overall and worse clinical outcomes.

Although linguistically diverse patients in predominantly Caucasian societies is a common phenomenon, it is relatively poorly studied across the globe, although some reports have demonstrated a tendency towards longer inpatient lengths of stay and higher readmission rates. In particular, one retrospective cohort study at two hospital affiliated with the University of Toronto, Canada, found that in over 9000 patients who presented to the emergency room or were admitted, culturally and linguistically diverse (CALD) patients had higher rates of re-presentations and readmissions if their underlying pathology was a chronic condition (chronic airways disease or cardiac failure) due to the complex care pathways involved upon discharge. This is highly relevant to the oncology patient, as consultations are time-restricted and management algorithms are highly complex and involve multiple parallel communication pathways, which carries a higher risk of misinterpretation when coupled with a background where English is not the patient's primary spoken language.

The use of a professional interpreter in medical consultations, defined by the Ontario Council on Community Interpreting (OCCI) as a "fluently bilingual individual with appropriate training and experience who is able to interpret with consistency and accuracy and who adheres to the Standards of Practice and Ethical Principles," has been shown to reduce significantly medical communication errors as compared with ad-hoc family members, improve duration of hospitalization, reduce readmission rates and improve patient satisfaction.

Caring for patients who come from CALD backgrounds poses a unique set of challenges not only from the perspective of the patient, but also for the treating physicians and team of health professionals, including those employed by interpretation services.

The iCALD-2 protocol aims to investigate barriers affecting CALD patient care using a questionnaire approach. Collectively with the iCALD retrospective study, this protocol looks to establish a baseline from which interventional studies surrounding CALD patients and interpretive services can be launched in the future, with a view to potential expansion across other tumour site clinics .

Impact of Cultural and Linguistic Backgrounds on Patient Care and Experience of Women With Gynecologic Malignancies

Examining the Impact of Culturally and Linguistically Diverse Backgrounds on Patient Care and Experiences in Women With Gynecologic Malignancies (iCALD-2): A Questionnaire Study

•Eligible patients will be matched to complete questionnaires in their specified preferred language. Question domains will encompass patient demographics, comprehension of diagnosis and treatment, clinical trials, palliative care and overall experiences in the clinic from the perspective of a CALD oncology patient, including identification of any barriers to optimal care.

Questionnaires will be anonymous and delivered in English only. Question domains will encompass demographics, professional background, and overall experiences in the clinic setting from the perspective of a professional team member caring for the oncology patient with CALD background, including identification of any barriers to optimal care.

Frequencies and proportions for the answers of multiple-choice questions in Oncology clinic experiences, Clinical trials and Palliative care clinic sections of Patient Questionnaire will be calculated and reported.

Patients answer specific questions about physical, emotional and practical challenges that impact with their ability to engage in their cancer care.

University Health Network, Toronto

Skin and Connective Tissue Diseases

Carcinoma

Skin Neoplasms

Carcinoma, Squamous Cell

Squamous Cell Carcinoma of Head and Neck

Neoplasms, Glandular and Epithelial

Neoplasms, Squamous Cell

Head and Neck Neoplasms

Patients with high risk cutaneous squamous cell carcinoma in the head neck region, receiving regular multidisciplinary care.

Patients receiving regular care. In addition, a semi-structured interview is conducted.

The semi-structured interviews take place once after completion of the care pathway (after all appointments for check-ups associated with the treatment). The interview contains questions about the experience of patients with the care, the needs in this care, the experiences with the information received, the support/guidance, the turnaround time, the treatment received and areas for improvement.

Regular care with additional administration of a semi-structured interview

K Mosterd, MD, PhD

The care of patients with high-risk cutaneous squamous cell carcinomas in the head-neck area is complex and requires a multidisciplinary approach. A key component in this care is the need and experience of patients. However, studies on the experiences and needs of patients with high-risk cutaneous squamous cell carcinomas in the head-neck region are lacking.

Cutaneous squamous cell carcinoma (cSCC) is the second most common form of skin cancer worldwide after basal cell carcinoma. It involves approximately 20% of all cutaneous malignancies and its incidence is still increasing. In 2020, nearly 15,000 cSCCs were reported in the Netherlands, of which approximately 50% concerned patients aged 75 years or older. UV radiation is the main risk factor for development of a cSCC, therefore the majority of cSCCs are localized to the sun-exposed skin in the head-neck region. cSCCs have a metastatic rate of 2.6-5% and recurrence rate of 1.9-3.7%, with rates increasing in high-risk cSCCs. The increasing incidence, advanced age, the (often) high-risk localization in the head-neck area (given functional and cosmetic importance) and the possible high risk of metastasis result in complex care, especially in stage T2 to T4 cSCCs, also known as high-risk cSCCs.

In this complex care, care pathways offer an excellent opportunity to improve multidisciplinary communication, patient satisfaction, quality and efficiency of care. In this, the experiences and needs of patients are of great importance. Previous research on the experiences and needs of patients with skin cancer is limited and particularly focused on melanomas. In 2017, a qualitative systematic review of the experiences and needs of patients with skin cancer found only two studies examining cSCCs. These studies showed that patients perceived clear information, attention to psychosocial aspects and attention to prevention as important.

In 2019, a study of the needs and experiences of patients with keratinocyte carcinomas, conducted through focus groups, showed similar results. Non of these studies examined cSCCs exclusively, nor did they differentiate by location. However, this appears to be relevant, because of the higher impact on the quality of life of patients with skin cancer in visible locations.

Additionally, studies have been conducted into shared-decision making as part of multidisciplinary care. Complex cases are currently often discussed multidisciplinary. However, several studies describe that such a multidisciplinary approach can impede multidisciplinary decision-making because the patient's perspective is often missing. Studies on the experience of patients with cSCCs in the head neck region are lacking.

Needs and Preferences of Patients With Head-neck Cutaneous SCC

The Needs and Preferences of Patients With High-risk Cutaneous Squamous Cell Carcinomas in the Head Neck Region: a Qualitative Approach

The emerging themes of patient needs an experiences in the care of cutaneous squamous cell carcinoma in the head-neck region.

The emerging themes of professionals' needs in the care of patients with cutaneous squamous cell carcinoma in the head-neck area.

The associations between the emerging themes and baseline characteristics (such as gender, age, marital status, education level, world health organisation performance status, informal care, history of skin cancer, co-occurrence of other skin cancers) and tumor characteristics (such as stage of cSCC, differentiation, type of treatment).

The associations between the emerging themes and characteristics of professionals (gender, age, type of specialty, number of years working as a specialist, number of years of experience within head and neck working group).

Maastricht University Medical Center

In stage III, patients who have been on an experimental cancer medicine trial for less than six weeks will complete a draft PREM-ECM (less than six weeks), the EORTC PATSATC33 and HAD questionnaires at entry to the PREM study (baseline/time point 1 (T1)). Approximately 50 patients will be asked to repeat the draft of the PREM-ECM (less than six weeks) approximately one week later at time point 2 (T2). In stage IV, the PREM-ECM will be administered alone.

In stage III, patients who have been on an experimental cancer medicine trial for more than six weeks will complete a draft PREM-ECM (more than six weeks), the EORTC PATSATC33 and HAD questionnaires at entry to the PREM study (baseline/time point 1 (T1)). Approximately 50 patients will be asked to repeat the draft of the PREM-ECM (more than six weeks) approximately one week later at time point 2 (T2). In stage IV, the PREM-ECM will be administered alone.

In stage III, carers of patients recruited on an experimental cancer medicine trial will be asked to complete a draft PREM-ECM-carers, the Adult Carer Quality of Life Questionnaire (AC-QOL), the EQ5D-5L, and the Hospital Anxiety and Depression Scale (HADS) at entry to the PREM study (baseline/time point 1 (T1)). Approximately 50 carers will be asked to repeat the draft of the PREM-ECM-carers approximately one week later at time point 2 (T2). In Stage IV, the PREM-ECM-carer will be administered alone.

Melissa B Stanworth, BSc

Janelle Yorke, PhD

This is a four stage, non-interventional study to develop and pilot test a Patient Reported Experience Measure (PREM) in experimental cancer medicine trials.

PREM-ECM will be conducted in four stages

Stage I - Item generation Two focus groups with four-eight participants each and approximately 20 interviews will be conducted with experimental cancer medicine trial participants to capture their experiences of participating in clinical trials and the care they have received during screening and trial participation. The investigators will also conduct up to ten interviews with informal carers (either as dual carer-patient or carer only interviews). Potential items for PREM-ECM inclusion will be extracted from these interviews (depending on carer data extraction their views will be incorporated into the patient item list or a separate 'carer experience' item list. Participants in Stage I will be asked to consent to possible cognitive interviews later in stage II. Interviews will be audio recorded using a Dictaphone which encrypts files in real time.

Stage II - Cognitive interviewing Following the creation of a draft item list, approximately five-seven participants from Stage I and three-five study naïve patients will undergo cognitive interviews to ensure that all items are clear and easily understood. Interviews will be audio recorded using a Dictaphone which encrypts files in real time.

Stage III - Item reduction and refinement for two PREM-ECMs A draft PREM-ECM (less than six weeks) and the EORTC PATSATC33 and HAD questionnaires will be administered to approximately 180 participants recruited into an experimental cancer medicine trial at entry to the PREM study (baseline/time point 1 (T1)). Approximately 50 patients will be asked to repeat the draft of the PREM-ECM (less than six weeks) approximately one week later at time point 2 (T2) - this is to test for individual item test retest reliability. A draft of the PREM-ECM (over six weeks) and the EORTC PATSATC33 and HAD questionnaires will be administered to approximately 180 participants recruited into an experimental cancer medicine trial at entry to the PREM study (baseline/time point 1 (T1)). Approximately 50 patients will be asked to repeat the PREM-ECM during approximately one week later at time point 2 (T2) - this is to test for individual item test retest reliability.

A draft PREM-ECM-carers, the Adult Carer Quality of Life Questionnaire (AC-QOL), the EQ5D-5L, and the Hospital Anxiety and Depression Scale (HADS) questionnaire will be administered to approximately 150 carers of patients recruited into an experimental cancer medicine trial (baseline/time point 1 (T1)). Approximately 50 carers will be asked to repeat the draft of the PREM-ECM - carers approximately one week later at time point 2 (T2) - this is to test for retest reliability.

Stage IV - Pilot testing of the PREM-ECM Both the PREM-ECM will be pilot tested with approximately 20 patients per questionnaire at The Christie site to assess its feasibility for routine collection of patient experience data.

Development and Validation of a Patient Reported Experience Measure for Experimental Cancer Medicine

Development and Validation of a Patient Reported Experience Measure for Experimental Cancer Medicine (PREM-ECM)

Collected by a Patient Reported Experience Measure in Experimental Cancer Medicine (PREM-ECM) questionnaire. A five point Likert scale is used to specify their levels of agreement with a statement, from low (1) to high (5). Higher scores are interpreted as better patient experience.

European Organisation Research and Treatment of Cancer (EORTC) Satisfaction with cancer care core questionnaire (PATSATC33). incorporates seven multi-item scales to assess doctors' technical skills, information exchange and affective behaviour, nurses/radiotherapy technicians' information/responsiveness and affective behaviour, and services and care organisation in terms of coordination and interaction with health care providers. In addition, five single items assess family/close persons' care involvement, access, environment, and overall perceived care quality. All of the scales and single-item measures range in score from 0 to 100. A high score represents a high level of satisfaction with care / perceived care quality.

Hospital Anxiety and Depression Scale (HADS). It comprises 14 items, seven to assess anxiety (HADS-A), namely items 1, 3, 5, 7, 9, 11, and 13; and seven to assess depression (HADS-D), namely items 2, 4, 6, 8, 10, 12, and 14. Each item receives a score from 0 to 3 on a Likert Scale. The total score for each HADS-A and HADS-D scale is obtained by adding the individual scores for each item, with the maximum score 21. The presence or absence of depression and anxiety was defined, for each respective scale, based on the following cutoff values: HADS (anxiety): 0-8 equal to (=) no anxiety; greater than (\>) 9 = anxiety; HADS (depression): 0-8 = no depression; \>9 = depression.

Adult Carer Quality of Life Questionnaire (AC-QOL). It is made up of eight different areas (care giving, caring preference, patient care stress, financial issues, personal development, valuing, caregiving ability and caregiver satisfaction). In scale evaluation, 0-40 points indicate "low quality of life", 41-80 points "average quality of life" and 81-120 points indicate "high quality of life"

EQ-5D-5L. Consists of two components: a health state profile and a visual analog scale (VAS). EQ-5D health state profile comprises five dimensions: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression. Each dimension has five levels: 1=no problems, 2=slight problems, 3=moderate problems, 4=severe problems, and 5=extreme problems. The 5D-5L systems are converted into a single index utility score between 0 to 1, where a higher score indicates a better health state. The VAS records the participant's health on a 0-100 mm VAS scale, with 0 indicating "the worst health you can imagine" and 100 indicating "the best health you can imagine". Higher scores of EQ VAS indicate better health.

Collected by a Patient Reported Experience Measure in Experimental Cancer Medicine- Carers (PREM-Carers) questionnaire. A five point Likert scale is used to specify their levels of agreement with a statement, from low (1) to high (5). Higher scores are interpreted as better carer experience.

Irene P Prabhu Das, Ph.D.

Background:

* Studies suggest that cancer patients diagnosed and treated in a facility with multi-specialty care and clinical research may live longer and have a better quality of life than patients treated elsewhere.
* The NCI Community Cancer Centers Pilot Program (NCCCP) is a 3-year program to test the concept of a national network of community cancer centers to expand cancer research and deliver the most advanced cancer care to Americans in their own communities.
* The pilot program includes a survey of cancer patients receiving care at the pilot sites.

Objectives:

* To gain an understanding of the experiences of adult patients who receive services at the NCCCP pilot sites and assess if and how their experience changes over the study period. Data about the following are collected:
* Patients information needs and awareness of the NCCCP program
* Clinical trials experience
* Access to health care
* Perspectives on patient-provider communication
* Experiences with patient navigation, self-management, medical decision-making and survivorship
* Satisfaction with care and quality of life

Eligibility:

* Patients 21 years or older at the time of diagnosis
* Treatment at the cancer center for at least 3 months since July 1, 2007

Design:

* Participants complete a 25-minute questionnaire covering the care they received at their cancer center, their experience with making medical appointments and how long they waited to see the doctor. The survey includes information on the following:
* Services at the cancer center
* Getting needed care
* Assistance for patients and their families
* Communication with the cancer care team
* Clinical trials
* Care after finishing treatment
* Evaluation of care
* Health and medical history
* Background information (demographics)

BACKGROUND:

The NCI Community Cancer Centers Pilot Program (NCCCP), http://ncccp.cancer.gov, is a three-year pilot program to test the concept of a national network of community cancer centers to expand cancer research and deliver the latest, most advanced cancer care to a greater number of Americans in the communities in which they live.The pilot program is designed to encourage the collaboration of private-practice medical, surgical, and radiation oncologists, with close links to NCI research and to the network of 63 NCI-designated cancer Centers principally based at large research universities. NCI contracted with RTI International (ww.rti.org) to conduct a comprehensive evaluation of the NCCCP pilot program using multiple methodologies, including a survey of cancer patients receiving care at the pilot sites.

OBJECTIVES:

The goal of the patient survey is to gain an understanding of the clinical experiences of adult patients who receive services at the NCCCP pilot sites and to assess if and how their experience change over the pilot period. Specifically, the survey instrument seeks to collect data about patients information needs and awareness of the NCCCP program; clinical trials experience; access to health care; perspectives on patient-provider communication; and experiences with patient navigation, self-management, medical decision making, and survivorship; as well as their satisfaction with care and quality of life.

ELIGIBILITY:

Each of the ten participating Centers will create a de-identified electronic file of all patients who meet the inclusion criteria:

1. living patients who are listed on a NCCCP site s cancer registry;
2. cancer patients age 21 years and older at the time of sampling; and
3. cancer patients who had 1or more cancer treatment outpatient visits at their Cancer Center since July 1, 2007 for the 1st round of data collection, and since July 1, 2009 for the second data collection. Center will create this file using their cancer registry and assign each individual a unique identification (ID) number.

DESIGN:

Each file containing the universe of eligible patients will be sent to RTI, from which 475 patients from each Center s list will be randomly selected. RTI will send a list back to each Center indicating which 475 patient IDs were selected for inclusion in the survey. The Center staff will match selected patient back to their master list using the Study ID number to identify patients included in the survey. RTI will deliver 475 pre-paid patient survey packets to each Center. The packets will include all required items except a Patient Notification Letter, which is a cover letter introducing the study and provides instructions on how to complete the survey. To protect patient privacy, Center staff will be responsible for generating the mailing labels and personalized Patient Notification Letter, and mailing the packets.

Community Cancer Centers Pilot Patient Survey

NCI Community Cancer Center Pilot Program Patient Survey

National Cancer Institute (NCI)

Behaviors and Mental Disorders

Anxiety Disorders

20 patients will be interviewed once, which will be approximately 60 minutes in duration. The interviews will be audio recorded.

Five patients who participated in stage 1 will take part in a cognitive interview, which will be approximately 60 minutes in duration.The interviews will be audio recorded.

not an intervention

Daisy Hopper

Jacqui Stringer, Dr

Jacqui Stringer

The study aims to explore the experience of patients with Head and Neck Cancer, who are preparing for and/or completed radiotherapy treatment.

This is a non-interventional study using interviews to explore head and neck cancer patients' experience of preparing for and completing radiotherapy utilising an immobilisation mask.

The study will be conducted in 2 stages:

The first stage is Item generation. Approximately 20 interviews will be conducted with head and neck cancer patients who have completed or partially completed radiotherapy. The interviews will capture their experiences and views pertaining to mould making, scans and radiotherapy, reported associated fear of restriction, suffocation, loss of control and fear of public embarrassment during treatment.

The data from the interviews will be used to develop potential items for a screening tool for identification of those patients likely to experience anxiety and claustrophobia before they start their treatment.

The second stage is cognitive interviews. Approximately 5 patients included in Stage I will be invited to take part in a further interview to review the themes and potential questionnaire items identified from interviews.

Qualitative Exploration of Head & Neck Cancer Patient Reported Experience of Radiotherapy

Qualitative Exploration of Head & Neck Cancer Patient Reported Experience of Radiotherapy With Focus on Restriction Anxiety & 'Claustrophobia

Interviews will be used to generate themes that capture the patients experience. These themes are the primary outcome.There are no units of measurement or data collection tools only an interview schedule.

interviews extracts will be used as potential item for the interview

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
PatIent exPeRiences and prEFerence of trEatment foR Multiple Myeloma	NCT06322927	Multiple Myelom...	Patient Intervi...	18 Years -	The Christie NHS Foundation Trust
Strategies to Improve the Experience of Gynaecological Screening	NCT05131581	Cervical Cancer	Changed clinica... Extra time allo... RLP-information	23 Years - 23 Years	Uppsala University
Impact of Cultural and Linguistic Backgrounds on Patient Care and Experience of Women With Gynecologic Malignancies	NCT05971303	Gynecologic Can...	Questionnaire	18 Years -	University Health Network, Toronto
Needs and Preferences of Patients With Head-neck Cutaneous SCC	NCT06046625	Cutaneous Squam... Cutaneous Squam... Squamous Cell C... Squamous Cell C... Squamous Cell C... Skin Cancer Patient Satisfa... High-Risk Cance... Preference, Pat... Decision Making Interview	Regular care wi...	18 Years -	Maastricht University Medical Center
Strategies to Improve the Experience of Gynaecological Screening	NCT05131581	Cervical Cancer	Changed clinica... Extra time allo... RLP-information	23 Years - 23 Years	Uppsala University
Development and Validation of a Patient Reported Experience Measure for Experimental Cancer Medicine	NCT05386602	Cancer		18 Years -	The Christie NHS Foundation Trust
Community Cancer Centers Pilot Patient Survey	NCT00786656	Malignant Neopl... Cancer		21 Years - 99 Years	National Institutes of Health Clinical Center (CC)
Needs and Preferences of Patients With Head-neck Cutaneous SCC	NCT06046625	Cutaneous Squam... Cutaneous Squam... Squamous Cell C... Squamous Cell C... Squamous Cell C... Skin Cancer Patient Satisfa... High-Risk Cance... Preference, Pat... Decision Making Interview	Regular care wi...	18 Years -	Maastricht University Medical Center
Qualitative Exploration of Head & Neck Cancer Patient Reported Experience of Radiotherapy	NCT04543045	Oncology Head and Neck C... Anxiety	not an interven...	18 Years -	The Christie NHS Foundation Trust

Spots Global Cancer Trial Database for patient experience