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

We used a qualitative research design, with focus groups (FGs) responding to a semi-structured interview guide. The data were analysed using interpretive description; a goal-oriented approach to qualitative data analysis. It is underpinned by the core elements of grounded theory and thematic analysis, but employs a purpose-driven approach to data in lieu of an unanchored exploratory lens [19]. Interpretive description’s value lies in the applicability of findings to clinical practice, offering purpose-specific knowledge to a predetermined field. For the purposes of this study, data about survivor perspectives and experiences with cancer and the SCSC Clinic is directly applicable to the SCSC. These findings will form the basis of practical, evidence-based recommendations for the SCSC Clinic. Ethical approval was provided by the Sydney Local Health District Human Research Ethics Committee–CRGH (file number HREC/14/CRGH/23). All participants provided written, informed consent.

All participants were English-speaking cancer survivors who had attended the SCSC Clinic at least once. They must have been medical oncology or haematology patients who had completed primary treatment (surgery, chemotherapy, and/or radiotherapy) with curative intent, and without evidence of cancer recurrence [16].

Recruitment of participants occurred via electronic letters, printed posters, and individual contact with existing SCSC clinic patients. FGs, involving between 3 and 8 participants, were set up and led by an experienced qualitative researcher and facilitator (HD) and first author (LO). All FGs were held in the SCSC cottage, Concord, NSW, Australia. The cottage provided a quiet setting, physically distanced from the Survivorship Clinic and chemotherapy day unit associated with survivors’ medical oncology treatment. Written informed consent and demographic data forms were completed before FGs started. FGs were semi-structured following a discussion guide (Supplementary file 3) and ran for 30–60 min. The guide covered perceptions of first SCSC Clinic visit, SCSC services accessed, ongoing unmet needs, and change in needs over time. FGs were digitally audio-recorded and supplemented by notes taken by LO. Audio-recordings were transcribed verbatim by LO. FGs continued until thematic saturation was achieved; no new themes arose for two consecutive FG. No repeat interviews were carried out. Transcripts were not returned to participants for comment and/or correction.

Participant demographics were summarised descriptively. FGs were analysed through interpretive description using a Framework approach. The Framework approach, summarised in Table 1, involves simultaneous data collection and analysis; researchers LO and HD independently, then collaboratively coded transcripts to develop a matrix of themes (Supplementary File 2), which were reviewed with data from subsequent FGs [20].

To enhance the validity of findings, the following steps were taken to minimise bias. LO created memos to summarise impressions before and after FG discussions. Verbal debriefing occurred between LO and HD directly after FG and during transcription review. The coding framework was developed iteratively, involving multiple researchers, and coding undertaken by multiple researchers. Verbatim quotations from participants were used to demonstrate relationship between themes and participant’s own words.

Participants were unsure what to expect at their first SCSC clinic visit, recounting feeling overwhelming “bombardment” (P18) of information. The optimal time to move to the SCSC clinic after treatment varied, with some indicating feeling unable to engage with SCSC staff soon after treatment. Others felt prioritised within the patient-centred structure that provided time and privacy to interact with each MDT member. However, participants expressed disappointment with the unclear conclusion to the initial clinic visit. The clinic’s proximity to the chemotherapy suite was undesirable given the negative associations many participants developed during their treatment.

Participants expressed overwhelming praise and gratitude to the multidisciplinary clinic team. They appreciated the “family” (P19) atmosphere from staff who “understand you” (P14) and ask “all the right questions” (P13), whilst alluding to the value of deeper “intrinsic bonds” (P23) formed with other survivors. Participants particularly valued the exercise physiologist’s expertise, noting the importance of advice on physical capacity by “someone knowledgeable about the surgery” (P22). Seeing the psychologist at the initial clinic visit was more controversial, with some participants unprepared to face their psychological concerns at that time. Despite this, participants acknowledged the importance of meeting the psychologist in facilitating future contact.

Participant evaluations of PROMs completed as part of follow-up were divergent. Some felt the PROMs were repetitive, “endless” (P22) and questioned “what the purpose was” (P20). Others valued the forced insight; “it made you aware” (P19) about aspects of survivorship that would otherwise have remained unconsidered, enabling survivors to monitor their progress. Participants recalled multiple pathways to learning about the SCSC clinic, including medical oncologists, clinical nurse consultants, other SCSC services, and community programs; but most were referred by their medical oncologists.

The diversity of patient experiences at the clinic highlighted the importance of individualised, patient-centred care. Participants expressed a desire for greater control over frequency of follow-up, the clinic staff they saw, and greater flexibility of SCSC services for working survivors. Specifically, the concern about follow-up moving from 3 to 6 months was underpinned by the desire for regular reassurance, being able to express their health concerns and gain “peace of mind” (P10) in the “safety blanket” (P20) of the clinic. Participants commended clinic recommendations as individually tailored survivorship care plans that were specialised and superior to standard follow-up care. The need for greater use of technology to ease the travel burden for patients and to increase the efficiency of survivor-healthcare professional interactions were identified.

Participants unanimously agreed moving into the survivorship phase (after primary cancer treatment was completed) necessitated a change in expectations of recovery, life priorities, and management of existential threats. Lasting effects of treatment permeated all FG, with physical sequelae (e.g. chemotherapy-related side effects), anxiety about present and future function, and uncertainty about mortality worrying all participants. Adjustment to survivorship was associated with variable symptoms and time-frames, with more persistent symptoms and longer-time frames manifesting as frustration with SCSC clinicians.

Much of the value in inter-survivor connections lay in shared stories of survivorship. These provided a barometer for recovery trajectory, normalising and validating survivor difficulties and experiences. Participants articulated a personal “priority shift” (P12) subsequent to threatened mortality, favouring self-fulfilment and self-actualisation over financial or material gains.

Caregivers and partners were perceived to have contrasting impacts on participants. Within the clinic, they supplemented survivor experiences and recall of content by note-taking and reminding survivors of questions, enabling more authentic survivor engagement with clinic staff. Conversely, participants were acutely aware the burden their health had on their caregivers’ stress, feeling obliged to remain positive for their sake: presenting the caregiver conundrum.

General practitioner (GP) contributions to survivorship were inconsistent. Participants noted a lack of specialised oncological knowledge hindering GP’s capacity to help survivors. Breakdown in the continuity of care between hospital and GP care was a particular concern, whilst others appreciated the time, trust, and GP’s superior knowledge of an individuals’ context.

Participants judged SCSC services associated with the clinic as extremely valuable in fostering inter-survivor relationships (through the cottage programs) and for receiving specialised care (e.g. in the gym). Greater support for these domains of survivorship care was considered important.

Exploring survivor experiences and needs at the SCSC Clinic is integral to continuous quality improvement in delivery of long-term survivorship care. Our results confirmed and augmented existing survivorship literature, and have been synthesised into recommendations to improve SCSC clinic care outlined in Table 5. The recommendations have been categorised as those able to be implemented in the short or long term, as well as by the projected resources required to implement each (low versus high). High resource recommendations are those requiring systems change, longer planning, and more time to set up and implement.

This qualitative study was limited by participant demographics which favoured female, breast cancer survivors born in Australia, and is particularly pertinent given the diversity in survivor needs relative to their cancer diagnosis [4]. A further limitation is the self-selection bias in FG participation. It is possible the cohort of participants did not reflect the opinions of the majority of survivors, rather representing the extremes of opinion, both good and bad, about the SCSC clinic. The majority of the participants had experienced the initial clinic only and their views may differ from those receiving longer-term follow-up in the SCSC clinic. Participant responses included their experiences during the active treatment period and other SCSC services (e.g. cottage activities, gym) and were not exclusive to the SCSC clinic. Whilst difficult to measure, the engagement of an experienced facilitator, use of semi-structured focus group discussion guide, adherence to iterative methods, and self-reflection on biases through memoing pre- and post-data analysis were integral to mitigating biases, thus improving the accuracy, reliability, and generalisability of findings.

Future research should seek to recruit a sample of survivors more reflective of the tumour groups attending SCSC Clinic and those who have attended SCSC clinic for longer follow-up periods to observe temporal changes in needs and explore their congruence with the SCSC clinic’s MDT. Other research questions include the exploration of diagnosis-specific survivor needs, and the relevance of this clinic model to adult survivors of paediatric cancer.