Objectives

The study explored how participants utilised the opportunity to make free-text comments as part of the England PROMs survey programme for cancer, and examined how emerging themes complement formal PROMs to provide understanding of QoL issues for cancer survivors.

Findings

Questionnaires were sent to 4992 patients, 126 (2.5%) of these had moved or died prior to receiving the questionnaire so the final sample size was 4866. In total, 3300 completed questionnaires were received with an overall response rate of 68%, of whom a third (1056, 32%) added material to the free-text comments box. Table 1 shows that participants completing the free-text box included very similar numbers of participants from each of the cancer sites (though with slightly more breast cancer survivors), male and female participants (537 and 519, respectively) and age groups.

As might be expected from a broadly phrased open question, the way in which participants chose to respond was diverse and varied in length and depth of information provided. As table 2 shows, within the first phase of the analytic process, the thematic framework categorised participant's responses into three over-riding themes: experiences of cancer diagnosis and treatment; experiences of living beyond cancer and issues unrelated to the experience of living beyond cancer. For the purposes of this paper, only findings within the first two themes will be presented, with most emphasis given to the second. Patterns in the views and experiences among participants were observed in the data and, during the second phase of the analytical process, a tentative model was developed (figure 1). Six factors appeared to impact negatively on patient-reported outcomes, while mediating factors that assisted recovery incorporated both professional-led and patient-led factors. Although developed from the data within this study this model has parallels with the conceptual model of self-management and self-management support following primary cancer treatment.6

Many participants (n=209) related experiences of excellent or very good care during the diagnostic and treatment phases of their disease. Positive comments included appreciation of a timely diagnosis through screening programmes or general practitioners (GPs) acting promptly to investigate reported symptoms, excellent or very good general care from the NHS, and coordinated care between staff and hospital departments. Some of the most positive comments reflected a sense of gratitude to particularly efficient and caring healthcare professionals. The trust such experiences engendered contributed positively to mental and physical recovery. Of those participants reflecting negative experiences (n=81) the most commonly reported involved: ‘unacceptable’ diagnostic and treatment delays, including delayed GP referrals to specialist consultations; instances of poor inpatient care; poorly coordinated treatment often perceived to be caused by unreliable hospital administrative processes; repeated appointment cancellations and delays; and lack of emotional support from some staff. All such experiences potentially contributed to the stress of cancer treatment.

A large number of participants (n=172) described how various comorbidities they suffered impacted on their experience of living beyond cancer, how they added to their physical, psychological and social difficulties following completion of cancer treatment and affected their QoL, and how comorbidities had often been exacerbated by their cancer treatment. Reported comorbidities varied widely but hypertension, arthritis, osteoporosis, long-term back pain and general problems relating to old age were predominant.

A wide range of on-going physical, psychological and social problems were reported by participants that were side effects of cancer treatment and which impacted greatly on QoL and mirror responses to the quantitative PROMs. Physical problems were described by 86 participants, and, as found in the quantitative data, those most commonly reported included problems with bowel and urinary incontinence; constipation; cognitive problems and diminished memory; pain; impotence and sexual difficulties; fatigue and peripheral neuropathy. Participants related how these frequently had a considerable impact restricting activities such as employment, travel and social activities, and were reported across all four tumour groups and timepoints from cancer diagnosis. Social factors were identified (n=62) that either caused or exacerbated the stresses of coping with a cancer diagnosis, including caring responsibilities, financial worries and the need to return to work. Concerns about the impact of the diagnosis on family and friends were common; especially worries about who would look after dependents should the cancer return. Similarly, financial worries were present for those not able to work, especially among self-employed participants, and contributed to feelings of depression and anxiety about the future.

Various on-going psychological problems were described by 122 participants, as a consequence of having had cancer (eg, fear of recurrence, difficulty planning ahead, fears that the disease will be hereditary and affect their children); and as a consequence of the on-going physical problems experienced (eg, poor body image following breast surgery or stoma formation, depression caused by sexual difficulties following surgery for bowel or hormone therapy for prostate cancer). Problems caused by cancer treatment were often either permanent or took far longer to diminish than participants had envisaged or had been advised, and there were similar numbers of participants describing such on-going problems 5 years from their diagnosis as participants diagnosed more recently. Again, this reflects scores from the quantitative PROMs measures, and many participants expressed surprise and exasperation at the duration of these problems: Thirteen months after surgery, I had a reversal (stoma). I was not given any advice or information as to what to expect regarding my bowel movements. To this day, I have to have a very limited diet, and choice of food if I do not want to spend all day on the toilet. I was never told that my bowel movements would not return to normal. I do not travel very far from home!

An important theme in the data was that some participants (n=36) perceived they had received a lack of preparation concerning the potential impact of cancer and its treatment. Inadequate preparation was found to have several dimensions: not being informed about the possible physical side effects of cancer treatments (that lymphoedema may follow breast surgery, that chemotherapy could lead to peripheral neuropathy, cognitive problems and bring on early menopause); being unaware of the potential psychological impact of both experiencing a cancer diagnosis and of treatment side effects, and when these might occur; not being provided with equipment to manage practical difficulties and not being advised of potential coping strategies to adopt. Participants indicated that such lack of preparation could greatly contribute to the negative impact that on-going physical and psychological problems had on QoL, but inadequate preparation also represented an on-going unmet need that may create an unnecessary additional cost for the NHS. I am concerned about the lack of information available in oncology units regarding long term after effects of treatments with chemotherapy. Tens of thousands of patients have been given chemo over many years and a significant proportion including myself must have sought advice on symptoms occurring sometime after treatment has stopped. It would appear that there has been no recorded effort to collate this wealth of information. This must have caused unnecessary stress to patients and cost the NHS a considerable amount through additional patient appointments.

The issue of preparation is not restricted to the responsibility of clinical teams: rather it is a system-wide issue and includes the information provided by pharmaceutical companies concerning known side effects of drugs. Since the very first dose of [drug name] I have been afflicted with bruising and sometimes bleeding on my arms from the slightest bump with door handles and supermarket shelves. I also suffer from tiredness and joint pain of various degrees of severity…the leaflet that accompanies [drug name] carries the date November 1997. After years of the life of a newish drug could not the manufacturers be prevailed on to bring up to date information that comes in every pack that cramp is a side effect.

There was also dissatisfaction concerning the adequacy of products designed to help manage the physical side effects of treatment and the personal expense involved. Incontinence was initially devastating but reduced over 4 months and by 6 months I was fully continent at night and by day needed only a small pad…my GP arranged provision of [Product name] male pads which were excellent. Due to administrative change the supplier was changed to [different product] incontinence pads which are useless as supplied because the penis post-radical prostatectomy shortens and cannot fit into the pad pocket…My GP nurse tells me they can only supply [product name] pads. This is not satisfactory…there is a need for improvement in NHS support.

Participants reported that a lack of information about possible treatment side effects sometimes caused unnecessary concern, even if these are not serious, because they were unexpected. Moreover, being insufficiently prepared also reportedly impacted on the ability of some participants to make informed decisions about treatment options. For example, one breast cancer survivor reported that she had received insufficient advice regarding fertility changes and the options available, and that the information booklet she received was reportedly outdated. Other participants stated that had they been provided with full information about the treatments they were going to receive they might not have proceeded with them. I had colorectal surgery, it`s side effects affected my life badly. I should have been warned/advised about those side effects to decide. If I knew about them I would not go ahead with the surgery.

Many participants (n=83) related experiences of aftercare, the majority reporting negative experiences. Some of these participants contrasted the good hospital treatment they had received with a lack of aftercare, which left them feeling isolated by the healthcare system once primary treatment was completed. Participants (n=34) often described the support they had received from family and friends after treatment providing practical help with housework and child care, emotional and financial support. However, in the absence of aftercare some participants (n=13) related ways in which their families and friends had helped with nursing care and administering medication. With regards to social services, more help etc. They did nothing for me. We/I never saw a nurse or home help. Even my daughter had to administer my injections after having [instruction] from the cancer nurses. We received no support…My partner had to change the drain bags for me as I was unable to do this myself.

The lack of aftercare often coincided with the point in recovery when the psychological impact of cancer and treatment was greatest. However, the tone of many comments is one of the enduring problems over many years without any form of support, with a few instances in which the free-text box was used specifically to ask for help. A need for greater emotional support for both physical and psychological problems as part of aftercare is articulated; especially as such problems often fail to diminish over time. Participants have a need to talk, ask questions and regain self-confidence. Should be more aftercare even when you are in remission. Once you have all your treatment you are left on your own to come to terms with what has happened. You don’t always want a medical team, just someone you can talk with.

Several participants noted that without informal support from friends and family individuals would have greater need of support from the NHS and allied agencies. Support of my wife and family made it easier to deal with. I feel those facing this alone or who are afraid to talk about it or even say the word cancer would need more help and support.

Participants who described significant emotional impact of having had cancer, or reported on-going treatment side effects with which they were struggling to cope, often also described experiencing a lack of patient preparation and aftercare. Conversely, by examining the comments of participants who report good experience and who have learnt to manage on-going problems it is possible to identify the various factors that helped mitigate what might potentially have led to poor life quality. The mitigating factors fell into two groups: professional-led and survivor-led.

Survivors describing good experiences often praised the well-coordinated care they had received while undergoing investigations and treatment and had been sufficiently prepared by health professionals for problems associated with cancer and treatment side effects. Professional-led mitigating factors also included quality aftercare, provided by named healthcare professionals especially clinical nurse specialists, with whom survivors and their families could remain in contact and discuss problems as they arose, and who supported the development of self-management strategies. This level of continuity often addressed the hiatus that many experienced at the end of their treatment, helped reduce fear of recurrence and increased confidence in the future.

Many survivors who coped well with on-going problems had reportedly discovered self-management strategies for themselves through a process of trial and error, often with the support of friends or family members, or through talking to others with similar experiences, rather than having had them explained by professionals. Strategies adopted by participants included: focusing upon the ‘positive’ aspects of life (n=41); adopting healthier lifestyles (n=8); maintaining or gradually increasing activity (n=29) as a way of getting life back to normal; returning to employment or voluntary work (n=20); and the use of psychosocial and complementary therapies (n=13). The teaching of potential strategies to manage physical problems such as bowel and urinary incontinence, fatigue and sexual difficulties transcends both patient preparation and aftercare, and several participants argued that affordable access to interventions such as counselling and talking therapies should be available to address issues like altered body image and fear of recurrence.