Dataset Information

Is there a need for change in cancer survivorship care? A qualitative exploration of survivor experiences and needs at the Sydney Cancer Survivorship Centre Clinic.

ABSTRACT:

Purpose

Effective cancer survivorship care is contingent on a comprehensive understanding and management of the dynamic needs of cancer survivors. The Sydney Cancer Survivorship Centre (SCSC) clinic established a holistic, multidisciplinary model of survivorship care. We aimed to explore survivors' experiences and perceptions of the clinic, and to identify their unmet needs.

Methods

Semi-structured focus groups (FGs) involving participants recruited from the SCSC clinic were conducted by an experienced facilitator and observer using a guide covering: survivor perceptions of first SCSC clinic visit, services accessed, ongoing unmet needs, and how needs changed over time. FGs were audio-recorded and transcribed. Interpretive description using a Framework approach was undertaken and participant characteristics summarised descriptively.

Results

Eight FGs were conducted involving a total of 26 participants (mean age: 60), most were female (n = 20), born in Australia (n = 14), and with breast cancer diagnoses (n = 16). Four overarching themes were identified: (i) perceptions of the SCSC clinic; (ii) patient-centred care; (iii) adjustment to illness; and (iv) external supports and resources. Participants valued the centralisation of multidisciplinary survivorship care at the SCSC clinic, which helped their recovery. Mitigating ongoing treatment sequelae, reassurance of good-health, normalisation of survivorship experiences, and handling caregiver stress represent some needs identified.

Conclusions

The SCSC clinic offers holistic, specialised care and reassurance to cancer survivors. Adjustment to the survivorship journey, inter-survivor shared experiences, and management of physical treatment sequelae were perceived as important in their recovery. Managing survivor needs is integral to improving long-term survivorship care.

SUBMITTER: Obeid LA

PROVIDER: S-EPMC10584705 | biostudies-literature | 2023 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Is there a need for change in cancer survivorship care? A qualitative exploration of survivor experiences and needs at the Sydney Cancer Survivorship Centre Clinic.

Obeid Liam Anthony LA Dhillon Haryana M HM Tan Sim Y SY Vardy Janette L JL

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 20231018 12

<h4>Purpose</h4>Effective cancer survivorship care is contingent on a comprehensive understanding and management of the dynamic needs of cancer survivors. The Sydney Cancer Survivorship Centre (SCSC) clinic established a holistic, multidisciplinary model of survivorship care. We aimed to explore survivors' experiences and perceptions of the clinic, and to identify their unmet needs.<h4>Methods</h4>Semi-structured focus groups (FGs) involving participants recruited from the SCSC clinic were condu ...[more]

PMID: 37851274

Similar Datasets

Project description:IntroductionThe care of cancer survivors after primary adjuvant treatment is recognised as a distinct phase of the cancer journey. Recent research highlights the importance of lifestyle factors in treating symptoms, potentially decreasing risk of a cancer recurrence and modifying the risk of developing other chronic illnesses that are increased in the cancer population. Survivorship services aim to deliver care that addresses these issues. The overall aims are to determine the health status of cancer survivors and to evaluate the services offered by the Sydney Survivorship Centre (SSC).Methods and analysisThis is an observational single-centre study evaluating the longitudinal physical and psychological health, symptoms, quality of life and lifestyle (physical activity and nutrition) of early stage cancer survivors attending the multidisciplinary Sydney Survivorship Clinic and survivors (at any stage of the cancer journey) and caregivers participating in SSC courses. Evaluation of patient satisfaction is included. Patient-reported outcomes and patient characteristics will be summarised using descriptive statistics with Spearman rank sum correlation coefficients to determine associations between patient-reported outcomes. Regression modelling may be used to further evaluate associations and to investigate risk factors and predictors of health outcomes. Qualitative data will be analysed using thematic analysis to identify themes. Sample size will be determined by attendance of consenting patients at clinics and courses.Ethics and disseminationThe study has received ethics approval from the Concord Repatriation General Hospital Human Research Ethics Committee (HREC/14/CRGH/23). The results will be published and presented at appropriate conferences.This study will provide important information regarding the health status and needs of Australian cancer survivors and the ability of the survivorship centre to address these needs. These data will shape the future direction of survivorship care in Australia and facilitate the design of interventions or measures to provide better quality of care to this patient population.

Project description:BackgroundCancer treatments have many adverse effects on patient's health leading to poor cardiorespiratory capacity, muscular- degeneration, fatigue, loss of strength and physical function, altered body-composition, compromised immune-function, peripheral neuropathy, and reduced quality of life (QOL). Exercise programs can significantly increase functional capacity when tailored to individual needs, thus improving health. Exercise interventions in cancer rehabilitation, when supported by appropriate nutrition can be effective in attaining a healthy weight and body-composition. The successful rehabilitation program should also include psycho-social education aimed to reduce anxiety and improve motivation.MethodsThe current study aimed to collect information on the post-treatment needs of cancer patients including barriers and expectations facing them, their caregivers and their families through consultation in focus group interviews. Cancer survivors living in the Republic of Ireland were recruited from the University Hospital Galway, community-based cancer centres, cancer support groups and social media platforms to participate in the study and attend a focus group interview. The focus group discussions were designed to obtain information on the collective views of cancer survivors on relevant topics selected. The topics were developed in consultation with a patient and public involvement (PPI) group supporting the study. The topics list was circulated to all participants prior to the focus group. The interviews were audio recorded and transcribed verbatim. Focus group transcripts were analysed subjected to a thematic framework analysis using NVivo.ResultsThirty-six participants took part in 9 focus groups. Our analysis uncovered two main themes. The first theme 'cast adrift with no direction' was grouped into three sub-themes: everything revolves around treatment; panic and fear; and what exercise should I be doing? The second theme 'everybody is different' was clustered into two sub-themes: side effects get in the way; and personalised exercise program.ConclusionThe study highlighted the lack of information and support needed by patients living with and beyond cancer. The study also highlighted the need for a personalised exercise programme designed to target the individual patient symptoms that would be ideal for the mitigation of long term symptoms and in improving QOL.

Project description:BackgroundImmune checkpoint inhibitors (ICIs) have significantly improved the overall survival of patients with metastatic melanoma. It is unclear how the growing group of metastatic melanoma survivors resume their lives after treatment, and which needs they have regarding survivorship care (SSC).ObjectivesTo gain an in-depth understanding of metastatic melanoma survivors' experiences of resuming life after ICIs and their associated SSC needs.MethodsA qualitative study was conducted among 20 patients with metastatic melanoma in whom ICIs had been discontinued after ongoing tumour response. One focus group (n = 9) was held, which was complemented by 11 individual interviews. Purposive sampling was used to select a variable sample in terms of sex, age, time since discontinuation of ICIs, and perceived impact of the disease. A topic guide was used to structure the (group) interviews, which were transcribed verbatim and analysed in a thematic content analysis, using several phases of coding.ResultsIn resuming life after ICIs, the prognosis switch often caused mixed feelings among patients, mainly because of the uncertainty about the future. Demands and expectations from self and others, persistent complaints and new problems in different life domains often make it challenging to proceed with life as it was prior to metastatic cancer. Patients indicated they needed to find a new balance, which included learning to cope with uncertainty and a changed perspective on life and close relationships. In terms of SSC needs, patients particularly stressed the need for more tailored patient information, available at one location. In addition, they emphasized the need to know who to turn to in case of questions and indicated the need for psychosocial support, also for their close relatives.ConclusionsMetastatic melanoma survivors face various challenges in resuming life after ICIs and are left with several unmet SSC needs. Efforts should be focused on offering psychosocial supportive care in addition to medical care, from diagnosis onwards, taking into account the patient's close relatives. A single point of contact and personalized survivorship care plan (SCP) could be of added value in guiding them through the patient journey, which is, given its multidisciplinary nature, particularly important in melanoma care. What is already known about this topic? Since the introduction of immune checkpoint inhibitors (ICIs) the overall survival of patients with metastatic melanoma has improved significantly, leading to a growing group of melanoma survivors. Melanoma survivors may face various problems and challenges in resuming life after treatment, which may be associated with unmet survivorship care (SSC) needs. An in-depth understanding of their experiences with resuming life and the associated SSC needs is currently lacking. What does this study add? Metastatic melanoma survivors experience various challenges after immunotherapy, from the uncertain prognosis switch to the struggle of finding a new balance in life. Besides negative aspects, such as complaints in different life domains, the patient journey is often accompanied by positive outcomes, for example a changed perspective on life. They stress the need for tailored patient information and broader supportive care, also for their close relatives. What are the clinical implications of this work? In addition to medical care, efforts should be focused on offering psychosocial supportive care, including return-to-work issues, from diagnosis onwards, ideally taking into account the patient's close relatives. To guide them through the patient journey, a single point of contact and a personalized survivorship care plan (SCP) could be of added value. The latter is particularly important in melanoma care, given its multidisciplinary nature.

Dataset Information

Is there a need for change in cancer survivorship care? A qualitative exploration of survivor experiences and needs at the Sydney Cancer Survivorship Centre Clinic.

Purpose

Methods

Results

Conclusions

Publications

Is there a need for change in cancer survivorship care? A qualitative exploration of survivor experiences and needs at the Sydney Cancer Survivorship Centre Clinic.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets