Background

Defining patient-centred care

“Patient-centred care” is widely promoted as an ideal goal of health care systems, but is often difficult to achieve in practice [1]. This is because it requires an integrated health system that is flexible enough to make the patient’s individual needs paramount. One of the earlier definitions from The US Institute of Medicine defined patient-centred care as “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions” [2]. Research conducted by the Picker Institute, an international charity, and Harvard Medical School led to the development of Picker’s Eight Principles of Patient-Centred Care in 1987. These have been updated over the years (see Box 1) and since 2002 the Picker Institute has worked with the National Health Service (NHS) in the UK to design patient experience surveys [5].

1987 version [3]

2018 version [4]

Respect for patient’s preferences

Involvement in decisions and respect for preferences

Coordination and integration of care

Effective treatment delivered by trusted professionals

Information and education

Clear information, communication and support for self-care

Physical comfort

Attention to physical and environmental needs

Emotional support

Emotional support, empathy and respect

Involvement of family and friends

Involvement of, and support for, family and carers

Continuity and transition

Continuity of care and smooth transitions

Access to care

Fast access to reliable health advice

Patient-centred care principles related to breast reconstruction in Australia

Traditionally, disease-specific “best practice” recommendations were embodied in clinical guidelines, and most countries have their own breast cancer management guidelines [6,7,8]. The latest complete set of published Australian clinical guidelines for early breast cancer dates back to 2001 [9] and is currently being updated. In the meantime, topic-specific guidelines have been produced to reflect the latest evidence in specific areas [10]. Cancer Australia has also published a Statement titled Influencing best practice in breast cancer [11]. This Statement is intended to complement the nationally endorsed Optimal care pathway for women with breast cancer [12], by highlighting what “ought to be done” in breast cancer care to “maximise clinical benefit, minimise harm and deliver patient-centred care” [11].

Number 11 of the 12 practices covered by the Cancer Australia Statement declares that it is “Not appropriate to perform a mastectomy without first discussing with the patient the options of immediate or delayed breast reconstruction” [11]. The Optimal care pathway document notes that patient-centred care is one of the “key principles” that underpin this pathway [12]. It defines patient-centred care as “healthcare that is respectful of, and responsive to, the preferences, needs and values of patients and consumers” and notes that it is “increasingly being recognised as a dimension of high-quality healthcare in its own right” [12]. These two publications [11, 12] have highlighted the growing importance of patient-centred care, at least at a rhetorical level. Previous research has documented significant variation in breast reconstruction (BR) uptake between different states and territories and between hospitals situated within metropolitan and non-metropolitan areas [13]. Much of this variation is related to hospital-based factors such as where individual surgeons work and what type of BR, if any, they offer [13, Feng et al., 2019, Patterns of immediate breast reconstruction in NSW Australia: a population-based study, In Press, ANZ J Surg]. These findings confirm that barriers to affordable and timely access to BR are multifactorial and require a combination of responses to address them. Further information about BR in the Australian setting is provided in Appendix 1.

Clinical practice guidelines and optimal care pathways are important tools to support evidence-based best practice treatment and management of a particular disease. Although these tools discuss the importance of patient-centred care, more specific principles are required to guide the implementation of patient-centred care in practice. This article has three aims: to develop an original set of generalisable patient-centred care principles (PCCPs); to identify barriers to the implementation of these principles in a real-world setting, using BR services in Australia as a case study; and to document examples of successful patient-centred care in relation to BR, in order to identify favourable conditions for the implementation of patient-centred care in practice.

Methods

This article reports on findings from the Improving Breast Reconstruction Equity of Access through Stakeholder consultation and Translation into policy and practice (I-BREAST) study.

Participants

One hundred and two participants were invited to take part in a single face-to-face or telephone interview with KF, an experienced qualitative health researcher. Twelve invitees (four surgeons and eight breast care nurses (BCNs)) declined to participate in the study, giving a response rate of 88%. Interviewees included 31 breast and plastic reconstructive surgeons and 37 breast cancer health professionals with primary appointments at 42 hospitals across mainland Australia. In addition, women who underwent mastectomy as part of their breast cancer treatment were purposively sampled to obtain the views of women who self-identified as being dissatisfied with their BR experiences (n = 22). While we realise that many women will be satisfied with their BR experiences, the reason for focusing on women who had negative experiences was to identify if there were specific problems that need to be addressed.

Selection criteria comprised the following:

  • Surgeons who either performed both mastectomy and BR themselves or in combination with plastic surgeons (convenience sample of 22 breast/oncoplastic and 9 plastic reconstructive surgeons).

  • Health professionals who worked with women undergoing mastectomy for breast cancer in centres that did and did not offer BR (purposive sample of 37 health professionals, mostly BCNs with selection informed by an earlier survey of BR practice in their local area).

  • Women who had undergone mastectomy for breast cancer, were interested in BR, and self-identified as being dissatisfied with their BR experience (purposive sample of 22 women).

Recruitment

Surgeons were identified through personal contacts, recommendations by other surgeons and comments by BCNs about particular issues in their local areas. Surgeons who did not perform BR were not invited to participate.

Health professionals (mainly BCNs) were initially identified via a Human Research Ethics Committee [HREC]-approved survey sent to BCNs in January 2016 via the membership lists of the McGrath Foundation, the NSW Breast Cancer Interest Group and the Breast Cancer Network Australia. This same survey was posted on the Reclaim Your Curves (RYC) website in May/June 2016, resulting in further BCNs volunteering to participate.

Women were recruited from a variety of sources including suggestions from surgeons and BCNs, as well as an invitation to participate in the study posted on the BR advocacy RYC website[14].

Recruitment of participants ceased when the study authors agreed they had reached a satisfactory level of data saturation (i.e. the same issues were being identified in subsequent interviews). The role of interview respondents by jurisdiction is provided in Appendix 2.

Interview processes

Interviews were conducted between May 2015 and May 2017 with written informed consent obtained from all participants. Face-to-face interviews took place at a convenient location for the respondent, with KF interviewing in seven capital cities and four regional centres. Telephone interviews were conducted with patients and health professionals in an additional 18 locations across mainland Australia. Interview duration ranged from 9 to 103 min (mean = 43; median = 41).

Data management

Interviews were digitally recorded and de-identified. They were uploaded and transcribed verbatim for data analysis by an independent transcription company that had signed a confidentiality agreement. Each participant was assigned a sequential reference number, with a prefix of W for women, HP for health professional and S for surgeon to ensure confidentiality. Responses from interviewees were grouped into broad topic-based categories, agreed on by all authors, to reflect the range of views on particular issues. Where data was relevant to more than one topic, it was included in all relevant categories. Appendix 3 provides the topics discussed by each group of respondents. This article is based on participant responses to the “Models of care”, “Support”, “Information”, “Cultural differences”, “Waiting times” and “Patient choice” categories.

Data analysis

The interview data provided evidence of situations where patient-centred care was non-existent or severely compromised. It also provided examples of high quality patient-centred care in certain locations. Through our evaluation of the variation in standards across different locations in Australia, the authors derived ten PCCPs that could be used to guide ideal provision of BR services. We then grouped participant quotes that demonstrated practical barriers to the implementation of each of the ten principles (Table 1). Finally, we grouped examples from the interview data of high quality patient-centred care under each of the principles to demonstrate that these ideal practices are possible within the Australian health system where resources are available and clinicians are willing to optimise patient-centred care (Table 2).

Table 1 Barriers to the implementation of principles of patient-centred carea, b
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Table 2 Examples of high quality patient-centred care in Australiaa
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Ethics approval

Ethics approval for the I-BREAST study was granted by the Human Research Ethics Committee of St Vincent’s Health Network Sydney (18/099).

Results

Box 2 presents the ten PCCPs the authors derived from their overall evaluation of the interview data.

Principle 1: Facilitate informed/shared decision-making

Principle 2: Maximise patient choice

Principle 3: Maximise equity of access to services

Principle 4: Maximise support for patients and their families

Principle 5: Maximise use of appropriate communication techniques and information materials

Principle 6: Minimise patient costs

Principle 7: Minimise short and long-term physical and psychosocial morbidity

Principle 8: Foster interdisciplinary patient management

Principle 9: Promote communication between care providers

Principle 10: Encourage evidence-informed practice

Table 1 presents the ten PCCPs and the practical barriers identified by our participants to the implementation of each of these principles, while Table 2 provides examples of successful implementation of the ten PCCPs in relation to BR.

Discussion

Interviews revealed examples of high quality patient-centred care in several metropolitan and regional hospitals, including public hospitals. However, challenges were also identified. Barriers to patient-centred care included problems of inadequate levels of staffing and resources, even in metropolitan and regional areas that could be reasonably expected to be well staffed and well resourced. However, the majority of the 42 hospitals represented in these interviews did not provide services that met all 10 ideal principles for patient-centred care and some of them would struggle to meet any.

It is not possible to discuss all the barriers that were revealed through these interviews, but we will mention a few items that, if implemented more widely, are likely to make a significant difference to the care women receive. Firstly, BCNs are clearly vital for the delivery of patient-centred care as evidenced by the poorer quality care patients received when BCNs were not available.

Secondly, the provision of specialist BR nurses is still a rarity in Australia, but the extra services they offer have the potential to add tremendous value to patients, surgeons and BCNs, as our findings and those from the UK have shown [15]. Specialist BR nurses have the knowledge to offer fully informed discussion, provide referrals as necessary and perform a range of practical tasks such as seroma drainage, inflation of expanders and nipple tattooing in a continuous care model of support. Specialist BR nurses can also collect, collate and analyse patient-reported outcome measures as a means of quality assurance and to inform clinicians of areas that could be improved, as well as to lobby for improved services. One particular benefit of having specialist BCNs is the potential for nurse-led survivorship clinics, which care for the patients once the active treatment phase has ceased.

Pre-operative MDT meetings are also scarce in Australia, with the majority of hospitals discussing their patients’ adjuvant treatment post-operatively. If women have opted to have IBR, then it has already been performed prior to any MDT discussion, with the surgeon being responsible for this decision. The exception is for women considering neo-adjuvant treatment, but in these cases, discussion often involves more informal talks between relevant multidisciplinary team members in order to fast-track chemotherapy treatment and BR is often not discussed in the MDT setting. Some hospitals do hold regular pre-operative MDT meetings which allow for a wider discussion of BR possibilities among clinicians prior to mastectomy. Where breast, oncoplastic and plastic surgeons attend, this could facilitate a more collegial approach to BR discussion, especially if it is open to other local surgeons as a mentoring tool for decision-making. Such cooperation can only benefit patients.

In addition to resource-based barriers to patient-centred care, this research has identified surgeon-based issues. Clinicians need to learn to be better communicators and listeners. Patient-centred care cannot exist in situations where the views of patients and their supporters are not valued. The use of a prompt list to guide BR discussion between surgeons and their patients is likely to be useful, as a reminder against omitting items that are important to the patient, or assuming they understand those issues [16]. Surgeons also need to be prepared to work collaboratively and in the patient’s best interests, even in situations where this may potentially disadvantage them financially. They should be prepared to engage with more junior surgeons to help develop their skills so that future patients will benefit from the time they have committed to mentoring. Surgeons also need to recognise the potential negative impact demarcation between surgical sub-specialties can have on patient care (Flitcroft et al., “On the frontiers of change”: breast surgeons’ views on demarcation between surgical sub-specialties in Australia, under review).

Finally, it is vital that clinicians keep up to date with the latest advances in breast cancer treatments in order to offer their patients treatment options tailored to their specific needs. Patient-centred care must be based on the best and latest evidence, requiring surgeons to keep up to date with clinical trials and relevant publications in order to provide their patients with the latest information. One example is the growing evidence that radiotherapy after implant or autologous reconstruction is oncologically safe, even for older women, does not delay treatment and provides cosmetic outcomes that women are largely satisfied with [17,19,20,21,22]. Furthermore, there is growing evidence of the benefits of neo-adjuvant radiotherapy (NART) in the setting of immediate autologous reconstruction. Tansley et al. [23] predicted superior outcomes from their resequencing of adjuvant radiotherapy in 2013, and their own and subsequent studies appear to confirm it is oncologically safe with a low side effect profile even during BR [24]. NART has also been reported to achieve significant downstaging in some patients with high risk, locally advanced breast cancer regardless of tumour phenotype [25]. Hughes and Neoh noted this treatment sequence allows patients to have an immediate gold standard reconstruction without an increase in surgical morbidity: “It affords the benefits of IBR without concern in delaying adjuvant therapy and appears to be safe from an oncological perspective” [26].

Limitations

The semi-structured questionnaires used in this research are not validated QoL assessment instruments. However, to our knowledge, there are no validated questionnaires available to capture women’s or health clinicians’ views on BR in their local area. It is also possible that some practices may have changed since 2015 when the first interviews were conducted.

Conclusion

We have compiled a list of 10 patient-centred principles that we believe, if implemented, would facilitate the delivery of high quality patient-centred care for women requiring or choosing mastectomy and interested in BR. We realise that achieving some of the ideal BR practices nominated here will not be feasible for many breast cancer services, at least in the short term. However, we believe it is important to identify what an ideal system would look like, so that with time, the care of these patients will improve and become more attuned to patient preferences. These patient-centred principles may form the basis for a national discussion about minimal standards of BR practice, while allowing for some necessary regional and cultural variation. Arguably, women living in rural and remote areas of Australia have different and more difficult access issues to deal with. Further research exploring specific BR models of care for these women is underway.

Policy implications

We have discussed the usefulness of these ten generic PCCPs in identifying barriers to and exemplars of patient-centred care in relation to BR. Their strength lies in their potential as a helpful framework to guide analysis of unmet needs in a range of other health care services. For example, these generalisable principles could be used to benchmark the patient-centredness of existing programs in areas of chronic disease such as other cancers, cardiac disease, diabetes or lung disease.