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Abstract
Objective Gynaecological oncology place of care is often based on evolution of services, along historical professional boundaries, rather than user needs or preferences. We aimed to assess existing evidence, gather views of patients in the UK on their preferred place of outpatient care for gynaecological malignancies and evaluate alignment with preferences of healthcare professionals (HCP).
Methods We performed a mixed methods study, including a scoping review, a patient survey and a healthcare practitioner questionnaire. We collected quantitative and qualitative data, performing content analysis to determine current practice and impact on patients.
Results No studies were identified in our scoping review. We received responses from 159 patients and 54 gynaecological oncology HCPs. There was a strong preference for a dedicated gynaecological oncology setting (89% somewhat or very happy) (p<0.0001). Fifty-three percent of patients were somewhat or very unhappy to have care colocated with general obstetrics and gynaecology services. Specifically, two key themes were identified through content analysis of qualitative data from patients: ‘environment and getting this right is vital’; and ‘our cancer should be the priority’. HCPs underestimated the strong patient preference to be seen in dedicated units. Of those who see patients within general obstetrics and gynaecology, only 50% said patients were seen at separate times/locations from obstetric patients.
Conclusion This study demonstrates the significant impact of place of care on gynaecological oncology patients, which may be underestimated by HCPs.
- Obstetrics and gynecology
- Patient-centred care
- Patient Preference
- Healthcare quality improvement
Data availability statement
Data are available upon reasonable request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Studies have shown that design of healthcare environment can significantly affect patient care, but have focused on environmental factors, rather than colocation of services.
WHAT THIS STUDY ADDS
Gynaecological oncology patients indicated that colocation of clinics with general obstetrics and gynaecology was psychologically distressing or inappropriate, as they were at a different point in their life journey.
Patients have a strong preference for their outpatient care to be provided in a dedicated gynaecological oncology setting, away from women and children’s services.
However, gynaecological oncology services were frequently colocated with general obstetrics and gynaecology services, reflecting evolution of the subspeciality and service development, rather than patient need.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
It is important to advocate for gynaecological oncology patients, to ensure that healthcare service infrastructure is designed around patient need, not historical professional boundaries.
Introduction
Gynaecological oncology outpatient care encompasses diagnosis, treatment and follow-up appointments accessed by patients. In the UK, physical location of services varies depending on organisation of resources within individual institutions, much of which evolves from pre-existing services and in spaces available at the time of development, rather than by conscious design. As the subspeciality of gynaecological oncology developed from general obstetrics and gynaecology, care may be delivered by healthcare professionals (HCPs) with other responsibilities within the wider specialty.1 Historical overlap of staff and resources with obstetrics, gynaecology and paediatrics means gynaecological oncology care in the UK is frequently delivered alongside other women and children’s services. This may be similar in many countries.
Obstetrics and gynaecology encompass a wide variety of different areas of medicine, making the specialty one of the most diverse areas of practice.2 Consequently, gynaecological oncology care in the UK National Health Service (NHS) is seldom delivered in localities centred on those being investigated, treated or followed-up for cancer. Treatment for a gynaecological cancer can result in loss of fertility, and this sense of loss can be strong for people of all ages.3 Additionally, nulliparity or infertility is associated with development of some gynaecological malignancies,4 which may further add to the emotional significance of where care is delivered, even when the individual is well outside of childbearing age. Female reproductive organs form a broader feminine individual perception and changes caused by surgery can leave a lasting feeling of loss.5 Not all patients may identify as women,6 which has implications for equity of access to care, especially if treated in a ‘women and children’s’ setting.7 8
Healthcare service design that is insensitive to patients’ needs communicates a negative message and makes people feel they are a low priority within the system.9 The place of care provision is important for fostering a sense of support.9 Reducing stress on patients associated with their environment is likely to increase the quality of a consultation; research has found that an elevated distress level is associated with an increased willingness to leave the decision control to the physician.10
The experience a person has of their care has been outlined by the NHS England as one of the three key principles in delivering cancer care.11 There are a multitude of considerations in designing healthcare services and it is widely acknowledged that a patient-centred environment is desirable.12 Compassionate care is central to good quality care, and clinical environment is one of the largest factors in delivering this aim.13
To design environments to facilitate patient-centred care, we need to understand their experiences and views. We wished to understand the views of patients, both current and potential service users, in order to inform redesign of local services, and ascertain the gap between need and current provision.
Methods
Scoping literature review
We performed a scoping literature review to inform local service redesign using broad search terms on the themes of “gynaecology” “oncology or cancer” “place or site or environment” “treatment” “patient or service user or participant” in a PubMed search including studies up to April 2022 (see online supplemental file 1).
Supplemental material
Study design and enrolment
A nested mixed methods approach was used to gather views of patients and HCPs. This was instigated following feedback from patients locally, describing their difficulties in seeing friends with young babies, when they were denied this possibility due to their previous treatment. It was also in response to videos on social media from a breast cancer surgeon, who has also been treated for breast cancer, before investigations for postmenopausal bleeding.14 Her obvious distress at the prospect of sitting in a mixed obstetrics and gynaecology waiting room, and replies to her post, prompted us to see how prevalent these concerns were. The survey was developed in conjunction with gynaecological cancer charity representatives from GO Girls, Peaches Womb Cancer Trust, Ovacome and Ovarian Cancer Action, and following informal feedback from patients, who were shown an early draft of the questionnaire (online supplemental file 2). We used qualitative data collected in the patient survey to help further understand the quantitative data responses.
Supplemental material
Women and people at risk of gynaecological cancers were invited to participate in a web-based survey by UK-based Gynaecological Oncology charities via email and social media (Twitter/X) (GO Girls, Peaches Womb Cancer Trust, Ovacome and Ovarian Action) with a total following of approximately 7000 people . This was an open invitation to anyone with an interest, targeted towards those with an experience of gynaecological cancer. All responses were voluntary and anonymous. No personally identifying data were collected. The survey was shared nationally, to broaden our understanding and avoid skewed responses in favour of existing local service models. HCPs registered with the British Gynaecological Cancer Society (BGCS) were invited to participate in a web-based survey distributed to members via email (online supplemental file 3). The society includes approximately 500 trainees, consultants and nurses working in medical, clinical and surgical gynaecological oncology, both centres and units. A response rate of 10%–20% was expected based on historic membership surveys (personal communication).
Supplemental material
Data collection and analysis
Both quantitative and qualitative data were collected via QR code links to web-based surveys (Microsoft Forms). HCPs were invited to complete the survey, if they were registered with the BGCS.
Quantitative data on responder characteristics and current service provision were collected. The patient survey included age, parity and clinical information, such as if they had been investigated or treated for a gynaecological malignancy. A 5-point Likert scale was used to assess how they would feel being cared for in different clinical areas. HCPs were asked a selection of binary and multiple-choice questions. A 5-point Likert scale was used to collect participants views on the current location of care services. Quantitative data were analysed with Microsoft Excel15 and Prism16 using χ2 analysis.
An open survey question was included to allow participants to expand on their experiences and gain deeper insights into their views. Content analysis was used for analysis, using the key steps that have been well described in the literature.17 It enabled the identification of any commonalities and differences across participant responses. Qualitative data analysis was supported by NVivo V.12 (QSR International, Melbourne, Australia).
Results
Scoping literature review
An initial scoping search of published literature retrieved only a very small number of potentially relevant papers in this area. Of the 4556 results from the PubMed search, none related specifically to our area of interest (online supplemental file 4 and online supplemental file 5). One study investigated patient views on change in service for a one-stop postmenopausal bleeding investigation clinic.18 Two articles described the effects of place of care in teenage cancer treatment.9 19
Supplemental material
Supplemental material
Patient attitudes
Quantitative data
A total of 159 participant responses were received, of which 140 of the respondents (88.1%) had been investigated for gynaecological malignancies. The median age of the respondents was within the 55–64 year age group (figure 1). Of those who answered, 97/158 (61.4%) had had children. The majority (157/159; 98.7%) identified as women, with one identifying as non-binary and one preferring not to say. Most (142/159; 89.3%) had been investigated for a potential gynaecological malignancy and 140/158 (88.6%) had been diagnosed with a gynaecological malignancy, reflecting targeting of respondents via gynaecological cancer charity communications and their social media channels. The median time taken to complete the survey was 2 min 47 s (range of 27 s to 36 min 14 s).
Distribution of patient survey respondent age by age categories.
A gynaecological cancer/colposcopy unit was overwhelmingly the preferred place for care, with 89.4% being happy or very happy and only 4.9% somewhat or very unhappy with this option. The response to a mixed specialty cancer investigation unit was less positive, with 40.5% being somewhat or very unhappy and 33.6% neither happy nor unhappy. Over half of respondents (53.6%) were either unhappy or very unhappy to be seen within a general obstetrics and gynaecology department (figure 2). There was a significant difference between the options in terms of preference (p<0.0001).
Preferences of different outpatient care locations for service users. Respondents were asked to rate how happy they would be to be seen in four common care settings for gynecological oncology outpatient investigation and follow-up on a 5-point Likert scale from very unhappy (black) to very happy (light grey). Categorical responses compared with χ2 analysis (p<0.0001).
Qualitative data
One hundred and eight respondents (67.9%) provided free-text responses for analysis. Data are presented within the following themes: (1) environment and getting this right is vital; and (2) our cancer should be the priority.
Theme one: environment and getting this right is vital
Participants overwhelmingly considered the environment for their cancer care as a crucial consideration when determining their preference for location of care. The majority of respondents reflected on the insensitivity of having gynaecological cancer care in the same setting as maternity services:
P4: ‘The impact on fertility from cancer treatment, it’s emotive to be around pregnant patients or patients with young babies.’
Many described their experiences of receiving care in a setting alongside maternity services as extremely negative, using descriptors such as: traumatic, insensitive, not appropriate, harrowing, thoughtless, stressful and upsetting. This was true for some women even if they had children of their own:
P33: ‘Walking through the maternity ward when you’re losing your last chance of being able to have a child is heart-breaking.’
There was an appreciation that attitudes of being seen alongside maternity services may depend on individual circumstances of whether women have had children or not:
P21: ‘As a woman with children I would not mind where I where [sic] seen…Perhaps if I was younger and possibly finding out I would not be able to have children naturally being seen alongside maternity patients might be difficult.’
P63: ‘It’s not fair—even as someone who never wanted children—to be lumped in with pregnant women.’
Women also described an environment that was ‘happy’ to be negatively triggering. This happiness was perceived to come from: seeing pregnant women, seeing children, seeing posters of babies and pregnant women or an awareness that other women in the waiting room were receiving positive pregnancy-related news:
P48: ‘If you’ve never had kids and/or want kids and then cancer is thrown in your path, the last thing you want to do is to be sat near happy pregnant women.’
P75: ‘It was awful being in the same room as IVF patients, both of us upset as we watched pregnant women glow and being happy as we were receiving the worst news.’
An additional perceived benefit to having care in a dedicated cancer setting was the notion of support: feeling supported by being surrounded by women who are going through the same experiences as each other, being in an environment that is felt to be safe, supportive and allowing women to feel at ease:
P10: ‘It is also sometimes comforting to know that others in the waiting room are there for broadly similar reasons.’
P138: ‘I prefer being in clinic with people who understand what is happening’
Theme two: our cancer should be the priority
Table 1 demonstrates the views and attitudes of services users towards the gynaecological cancer diagnosis. There was a strong belief that care for gynaecological cancer should be delivered by specialist teams. Assumptions and beliefs included thoughts that clinicians: have greater interest, provide ‘better care’ and more up-to-date. A small number of participants did reflect on personal positive experiences of mixed cancer centres:
P19: ‘I am being treated at a mixed speciality cancer centre and am extremely happy with my experience there.’
Theme two: ‘Our cancer should be the priority’—views and attitudes of patients towards the gynaecological cancer diagnosis
HCP attitudes
Fifty-four responses were received to the HCP survey from 41 separate institutions across the UK, a response rate of 10%, but with data from 27 of the 47 (57.4%) of the gynaecological cancer centres in the UK. The majority of respondents (81.5%) worked in gynaecological oncology; 13% in obstetrics and gynaecology. Just over half of respondents were consultants (53.7%) and 25.9% were specialist nurses. Two-thirds (66.8%) of respondents worked within cancer centres and 27.8% within cancer units; 3.7% stated ‘other’.
Investigation of patients referred with a suspected gynaecological malignancy is undertaken in a mix of settings: 35% are seen in a cancer investigations unit (31.4% gynaecological cancer/colposcopy, 3.7% mixed cancer investigation unit); 35.2% are seen in an obstetrics and gynaecology/women and children’s department. The remaining 29.6% selected ‘other’ locations. Of those who saw patients within general obstetrics and gynaecology/women and children’s services, only 50% said patients were seen at separate times/locations from obstetric patients.
We compared the HCPs perceptions of patient preferences for each place of care and analysed with χ2 analysis to see whether these differed from patient preferences for outpatient care location. HCPs were aware of the low level of acceptability to patients of being seen in a women and children’s unit (p=0.224). However, HCPs overestimated the acceptability of a mixed specialty cancer unit (p<0.0001) or a general obstetrics and gynaecology setting (p=0.015), which were perceived by many patients as inappropriate places of care, and underestimated the strong preference for a gynaecological cancer/colposcopy clinic (p≤0.0001) (figure 3).
Comparison of patient preferences and healthcare professional (HCP) views on patient preferences for four common care settings for gynaecological oncology outpatient investigation and follow-up on a 5-point Likert scale from very unhappy (black) to very happy (light grey). Patient preferences and HCP views for each setting compared with χ2 analysis (see text). Gynae onc, gynaecological oncology; O&G, obstetrics and gynaecology; W&C, women’s and childern's center.
Discussion
Summary of main results
These findings highlight the significance of the care environment for those receiving investigations and treatment for gynaecological cancers. The responses from patients about their care experiences were emotive and highlighted potential ongoing harm to patients, if place of care is not considered.
Two themes were identified; the first ‘environment and getting this right is vital’ and the second ‘our cancer should be the priority’. Respondents describe having their cancer care provided alongside maternity care as ‘traumatic’, ‘insensitive’, ‘not appropriate’, ‘harrowing’, ‘thoughtless’, ‘stressful’ and ‘upsetting’. These responses were not unique to those of childbearing age, as respondents were predominately no longer of childbearing age. Those that had no plans for future pregnancies were still affected by their shared environment. The emotional and psychological impact of gynaecological surgery is significant and long lasting,20 and can result in a feeling of having lost one’s femininity.21 This ongoing impact highlights the importance of consideration towards place of care in the follow-up setting, as much as during diagnostics and treatment.
Some of the responses highlighted loss of fertility as a key concern with relation to those receiving care around them. Being in a ‘happy environment’ was also raised as being negatively triggering and laid bare the stark contrast between their own situation and that of pregnant women receiving positive pregnancy-related news around them. Posters of babies and pregnant women contributed to the ‘happy environment’ they were in, but felt estranged from.
A gynaecological cancer/colposcopy unit was found to be the preferred place for care in the quantitative data collected. This was reflected in the qualitative data where there was a notion of support when care was given in a dedicated cancer setting. Patients expressed feeling supported by being surrounded by people who are going through the same experiences as them, being in an environment that is felt to be safe and supportive and allowing people to feel at ease, reflected in the second theme ‘our cancer should be the priority’ and supported by the quantitative data.
Only 18% of respondents were happy or somewhat happy to receive care in a mixed specialty cancer investigations unit. Conversely, 45% of healthcare practitioners felt that patients would be happy or somewhat happy in this mixed specialty cancer environment. This suggests that as clinicians we underestimate the importance to our patients of being in a specialist centre to their feeling of support.
Results in the context of published literature
These findings were reflected in the teenage cancer population, where Teenage Cancer Units are found to provide an appropriate environment where this specialist population feels comfortable and their needs are met. Being in a cancer unit dedicated to their care provided a supportive bond.9 19 It is interesting that, we consider the needs of teenagers with cancer, with associated research, but there is a dearth of information on this topic for gynaecological cancer care.
Strengths and weaknesses
It is important to consider the limitations of this study. There is a high risk of selection bias in the patient questionnaire. The invitation was shared by gynaecological oncology charities via social media (Twitter/X) and email newsletter. Therefore, participants may not be a representative sample of the intended population. Twitter/X users are more likely to be younger adults, urban dwellers and have a higher median income than the general population.22 Additionally, those that chose to participate may have had particularly memorable experiences prompting them to respond. This could have resulted in greater extremes of views than those help by the target population.
The professional views questionnaire was again open to selection bias. The majority of respondents (68%) work in cancer centres, broadly reflecting the membership of the BGCS. Responses may have differed if a higher proportion of participants worked in cancer units, where care and facilities may be less specialised and based within general obstetrics and gynaecological facilities. Thirty per cent of centres delivered gynaecological oncology care in settings mixed with obstetrics, compared with 50% in units. However, there was no significant difference between centres and units (p=0.43), although the study was underpowered. It may be that nationally fewer patients are investigated for a potential gynaecological cancer or followed-up in a specialist setting, since the economy of scale in larger tertiary referral centres may facilitate the delivery of dedicated services in more bespoke settings. However, we are not able to determine this from our limited data. Furthermore, larger centres are also subject to historical colocation of services based on professional boundaries, since the subspecialty of gynaecological oncology developed from obstetrics and gynaecology, and centralisation of gynaecological oncology surgery in the UK has only been well-established since the introduction of the NHS Improving Outcomes Guidance in 1999.23
Implications for practice and future research
These findings should help to shape future healthcare services, both in building design and how buildings are used. Although the opportunity to design a new hospital or department is rare, it is our responsibility to advocate for our patients in gynaecological oncology and ensure their experiences and preferences are heard. When services are being redesigned or relocated within an existing structure, these research findings should help us to consider if more compassionate care could be provided in an alternative location. Where care needs to be colocated with other services, attention should be paid to the environment and creating a sense of care around this group of patients. This could include dedicated entrances and waiting areas, considerate scheduling of clinics and timing of appointments, and mindfulness regarding the surrounding images and information.
We aim to further investigate the questions raised in this preliminary study with wider sampling of those with gynaecological cancers and people attending for investigation of suspected gynaecological cancers, collecting quantitative data from questionnaires and qualitative data and thematic analysis from in-depth interviews, to understand more deeply how the physical environment and colocations of services impact those we care for.
Data availability statement
Data are available upon reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
The Somerset NHS Foundation Trust research ethics committee deemed ethics approval was not required, after completion of the Health Research Authority decision tool (http://www.hra-decisiontools.org.uk/research/), as this was a service improvement project to be used to inform re-design of local services.
Acknowledgments
We thank: Dr Liz O’Riordan and several women with gynaecological cancer in Somerset for their honesty and bravery in sharing their concerns, which prompted this work; Dr Andy Bryant for his help with statistical analysis; BGCS council, especially Nick Wood and Deborah Lewis, for supporting the study and sharing the HCP questionnaire with the membership; Anna Hudson (Ovacome), Georgina Tharp (Ovarian Cancer Action) and the teams at GO Girls and Peaches Womb Cancer Trust and Dr Liz O’Riordan for distribution and promotion of the patient questionnaire, as well as comments in its development; Cate Newell and her team in the Somerset NHS Trust Library and Knowledge Service with their help and advice designing and running the literature search for the scoping review. We are especially grateful to all those who shared their views and experience of accessing gynaecological oncology care and hope that this will help to design the services you deserve.
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Twitter @DrJoMorrison1
Contributors JM and RN developed the original idea for the study. RN and VC performed the scoping review. JM and RN designed the surveys with advice from HM, EJ and VC. HM, EJ, JM, RN and VC contributed to data collection. JM and RN performed quantitative data analysis. EH and RN performed qualitative analysis. All authors contributed to writing and approved the final version of the paper. The guarantor (JM) accepts full responsibility for the work and/or the conduct of the study, had access to the data, and controlled the decision to publish.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.