Experiences and perspectives of colorectal cancer survivors and general practitioners on the delivery of survivorship care in general practice: a mixed methods study

Study design

This was a mixed methods study using a cross-sectional national survey and one-on-one interviews with CRC survivors and GPs. For a comprehensive examination of their perspectives and experiences, we utilised a sequential mixed-methods approach, where the survey provided a general overview with larger sample size, followed by interviews, allowing a more in-depth examination of specific topics. Integration of the results occurred during synthesis. For example, in instances where the survey responses required explanation, interview data were utilised. This study reports on survey findings from CRC survivors and GPs, and interviews conducted with GPs. The findings from CRC survivor interviews are presented separately (Rutherford et al. 2023) due to the richness of the data describing their experiences and life impacts, warranting a standalone paper.

Participants

CRC survivors were eligible for the study if they were aged ≥18 years, had completed primary treatment in Australia following a CRC diagnosis, could share thoughts and experiences in English, and were able to give written informed consent to take part. GPs with experience treating CRC survivors in Australia were eligible to participate.

Recruitment

Several recruitment methods were used. An electronic advertisement containing the participant information sheet and a link to complete an anonymous survey or express interest for an interview was distributed through major professional primary care and consumer societies and organisations across Australia. All participating organisations approved the dissemination of the study invitation via their membership.

The study was also advertised through email invitations of our investigators’ collegial networks and social media sites (Facebook and Twitter). Facebook group members ranged from 707 to 50,000. A snowball sampling strategy was used, where on completion of the survey, each participant was invited to forward the study information to eligible others. When participants accessed the survey link, they were prompted to provide consent prior to starting the survey.

Data collection

Two surveys (CRC survivor and GP) were administered online using REDCap between 10 March 2021 and 31 October 2021. Participant demographics (Tables 1 and 2), practice information (Table 2), experiences of CRC survivorship care in the community, care gaps and ways to improve care (Supplementary Appendix A) were examined. The investigators developed the questionnaire, guided by the domains of enquiry presented in Supplementary Appendix A. The survey was pilot tested by consumer and GP investigators, and underwent multiple iterations to ensure contextual appropriateness and readability. A mock interview was conducted with a GP investigator to assess the suitability of the interview questions. Interviews were conducted via in-person, telephone or Zoom, based on participants’ preferences. GP interview participants were provided with financial reimbursement for their practice time.

Data analysis

Ethics approval

Ethics approval was obtained from the University of Sydney Human Research Ethics Committee, Project No: 2020/851, prior to study commencement. All participants provided informed written consent to take part in the study.

Survey participant characteristics

Survey responses were obtained from 51 CRC survivors and 19 GPs. CRC survivor participants were predominantly female (n = 40, 79%) and younger than the average CRC survivor (n = 21, 41% aged <50 years; Table 1). Free text survey responses are presented in Supplementary Appendix B. Of the GP participants, 37% (n = 7) had practiced as a GP for 1–5 years, and 21% (n = 4) for >20 years. Most GPs (n = 12, 63%) saw fewer than five CRC survivors per year (Table 2).

Survey results from the CRC survivors

Most CRC survivor participants (n = 40, 78%) had a regular GP or practice prior to their cancer diagnosis, and the majority (n = 31, 61%) continued to visit the same GP or practice after diagnosis. The common reasons for seeing the GP post-treatment are summarised in Fig. 1. Half (n = 28, 55%) reported their GP asked about their cancer recovery when they saw them for non-cancer related reasons. The types of care received when they saw the GP for managing cancer-treatment related concerns are presented in Fig. 2.

Fig. 1.

The most common reasons for CRC patients to see a GP after cancer treatment (participants could select more than one response).

Fig. 2.

The types of care provided by GPs when CRC survivors consulted for managing treatment sequelae (participants could select more than one response).

When sequelae of treatment were experienced, 39% of CRC survivor participants (n = 20) consulted their GP first, followed by their medical oncologist (n = 10, 20%), cancer nurse specialist (n = 5, 10%), surgeon (n = 4, 8%) or community nurse (n = 1, 2%). Participants also accessed written and online information (n = 16, 31%), sought advice from peers (n = 15, 29%) or learnt to manage their sequelae through trial and error (n = 13, 26%).

Fig. 3 illustrates that participants experienced a wide range of sequelae of CRC treatment, which they did not always discuss with their GPs, as well as those sequelae that GPs routinely assessed during consultation. CRC treatment had a negative impact on survivors’ overall wellbeing, as almost half of survivor participants reporting emotionally not feeling as healthy/stable as they used to be as a result of treatment (n = 25, 49%), having to reduce their paid/volunteer work (n = 21, 41%), and experiencing financial burden from out-of-pocket expenses for managing sequelae of treatment (n = 20, 39%). Less common treatment-related impacts were described as inability to participate in social activities as they used to (n = 14, 27%) and altered relationships with loved ones (n = 12, 24%). Only six (12%) responded that their cancer treatment did not impact on their overall health or wellbeing.

Fig. 3.

Treatment sequelae experienced by CRC survivors and degree of disclosure with their GP, and the assessment of sequelae by GPs.

As illustrated in Fig. 3, survivor participants did not always raise the issues they experienced with their GP. Most survivor participants (n = 41, 80%) found it difficult to discuss certain concerns with their GP, such as sexual and intimacy concerns (n = 17, 33%), psychological or emotional concerns (n = 11, 22%), feelings of isolation (n = 10, 20%), cognitive issues (n = 9, 18%), and financial concerns (n = 6, 12%).

Common reasons for not discussing post-treatment concerns were their perception that not much could be done to help (n = 17, 33%), and the cancer specialist had informed them that the problem would gradually improve (n = 15, 29%). Other less common reasons were their perception that their concerns were minor (n = 12, 24%), feeling awkward or embarrassed (n = 12, 24%), or lacking confidence to raise certain concerns (n = 12, 24%), feeling that their concerns were too sensitive or personal (n = 11, 22%), or thinking that the GP would not be able to help (n = 10, 20%). A small proportion of participants (n = 6, 12%) reported that they did not raise a concern or issue they were experiencing with their GP, because they felt that their GP seemed disinterested or hurried. Half of participants (n = 26, 51%) felt more comfortable discussing sensitive concerns if the GP brought it up.

Half of the survivor participants (n = 25, 49%) believed that their GPs had ‘some’ understanding of the sequelae of CRC treatment, with slightly fewer (n = 16, 31%) feeling that their GPs had a ‘good’ understanding. Approximately one-third of the survivor participants felt that their GPs had a good (n = 18, 35%) or some (n = 19, 37%) knowledge of available services, resources and other local health care professionals to refer to.

Almost half (n = 26, 51%) of participants were ‘satisfied’ with the help or support they received from their GPs. However, a further 37% (n = 19) were only somewhat satisfied or not at all satisfied with their care (11%). Almost half (n = 25, 49%) felt that GPs should be their main health care provider to coordinate follow-up care post-cancer treatment. Few participants considered that cancer specialists (n = 6, 12%) or nurses (n = 2, 4%) should fill this role.

Survey results from the GPs

Half of GPs (n = 10, 53%) were involved in their CRC patients’ diagnosis and referral to specialist cancer services. Most commonly, GPs received information back from cancer treatment services about their patients after CRC treatment in letters from the surgeon or medical oncologist (n = 19, 100%) and discharge summaries (n = 12, 63%). Almost half felt that the information they received was insufficient (n = 9, 47%) and received in a somewhat timely (n = 7, 37%) or untimely (n = 4, 21%) manner. Common methods for exchanging information with the hospital or specialist cancer services were via fax (n = 9, 47%) and telephone (n = 7, 37%). Only two GPs (11%) used electronic medical records to communicate with these services.

GPs reported that after completing treatment, CRC survivors most typically consulted them for help managing comorbid conditions (n = 10, 53%), medical certificates or prescriptions (n = 10, 53%), psychosocial care (n = 9, 47%), preventative health care, such as immunisations/periodic health assessments (n = 9, 47%), and management of side-effects from cancer treatment (n = 8, 42%). Less than half of GPs reported that they specifically asked their CRC survivors about post-CRC treatment concerns (Fig. 3). GPs considered that they were least equipped to manage sexual, intimacy or relationship concerns (n = 6, 32%), stoma-related concerns (n = 5, 26%) and financial issues (n = 5, 26%).

The usual actions GPs took when survivors reported CRC treatment sequelae were referring CRC survivors to a medical specialist, acute care hospital or cancer specialist (n = 10, 53%); ordering investigations, such as pathology and radiology (n = 8, 42%); prescribing medications (n = 6, 32%); providing psychosocial support (n = 6, 32%); and seeking advice or information from the cancer nurse specialist at the cancer services (n = 6, 32%). When seeking information or identifying appropriate local services to help survivors manage sequelae of treatment, GPs primarily relied on their professional expertise and prior knowledge of CRC survivorship care (n = 8, 42%), reviewed the discharge letter (n = 6, 32%), contacted specialist cancer services or asked a colleague (n = 5, 26%), or utilised HealthPathways (n = 4, 21%).

Interview participant characteristics

Four female GPs aged between 30 and 69 years, working part-time in metropolitan practices with 4–38 years of experience seeing between 2 and 10 CRC patients each year participated in interviews. In addition, 11 GPs provided free text responses in the survey. Key themes from all qualitative data are described below.

Qualitative findings from the GPs