Patient experience of the diagnosis and management of patellofemoral pain: A qualitative exploration

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Highlights

  • Patients see a diagnosis as essential, but one was rarely provided.

  • Interventions should be tailored as not all patients will respond in the same way.

  • Education empowers patients and helps them understand PFP.

  • People with PFP desire personalised care that meets their individual needs.

Abstract

Background

Patellofemoral pain (PFP) is common and long-term treatment outcomes are unsatisfactory. Qualitative exploration of diagnosis and management from the perspective of people with PFP is lacking.

Objectives

To inform care and improve intervention delivery by exploring the experience of people with PFP regarding diagnosis and management.

Design

Qualitative study with semi-structured interviews.

Method

Online recruiting yielded a convenience sample of participants with PFP for semi-structured interview. Interviews were recorded, transcribed verbatim, and analysed using thematic analysis until theoretical saturation by multiple investigators to determine themes and sub-themes.

Results

12 participants were interviewed, with three themes identified; the value of diagnosis, the need for tailored (individualised) care, and the role of education. Participants viewed receiving a diagnosis as essential to guide management, yet one was rarely provided, causing uncertainty about pain mechanisms; “it's nice to be told what it is that's wrong”. Interventions needed to be tailored to the individual as not all participants responded in the same way to treatment(s) or had the same needs; “everyone copes and reacts differently”. Finally, participants viewed education as essential to empower them to understand and manage the condition; “if I'd have been given more information, I think I'd know how to deal with it more”.

Conclusions

The overarching narrative from three themes was a desire for clearly communicated personalised care that meets individual needs. People with PFP desire a diagnosis to explain their pain, tailored interventions, and appropriate education to optimise their experience and outcomes.

Introduction

Patellofemoral pain (PFP) is characterised by insidious onset retro-and/or peri-patellar pain, aggravated by loading a flexed knee (Crossley et al., 2016a). PFP affects 22.7% of the United Kingdom population (Smith et al., 2018b), has a poorly understood aetiology (Neal et al., 2019), and affects occupational, social, and sporting activities (Crossley et al., 2016a). Research aimed at managing PFP is primarily quantitative (Smith et al., 2018a), with randomised control trials of varying methodological quality (Kedroff et al., 2019) recommending addressing the biomechanical impairments associated with PFP (Vicenzino et al., 2019). Despite the strength of this research PFP has a poor prognosis, with >50% of people reporting persistent pain five years post-treatment (Lankhorst et al., 2016).

One proposition to improve outcomes in PFP is to apply a biopsychosocial (BPS) approach, focusing on holistic care (Sanchis-Alfonso et al., 2015) rather than traditional biomechanical methods (Barton et al., 2018). The focus should be the person, rather than their painful joint, understanding their personal experience and impact on their life (Vicenzino et al., 2019). Other factors that influence PFP, such as fear and anxiety, should also be addressed (Bunzli et al., 2013). There is a paucity of qualitative research on the lived experience of people with PFP (PwPFP), with research focusing on pathophysiological causes despite patients’ concerns about the impact of pain on their quality of life (Robertson et al., 2017).

Qualitative research provides rich insight into patient experiences (Braun and Clarke, 2014), allowing a greater understanding of the factors influencing these experiences to inform healthcare provision (Gelling, 2015). Two qualitative studies on the lived experience of PwPFP have been conducted (Robertson et al., 2017; Smith et al., 2018a), reporting a loss of self-identity (Smith et al., 2018a) and fear avoidance due to crepitus and pain (Robertson et al., 2017; Smith et al., 2018a). The negative experience of living with PFP was compounded by uncertainty about the cause of pain (Robertson et al., 2017; Smith et al., 2018a), conflicting advice (Smith et al., 2018a), and an overall lack of empathy (Robertson et al., 2017; Smith et al., 2018a). These studies focussed on exploring living with PFP, rather than understanding patients’ experience of their diagnosis and treatment.

The high prevalence and poor prognosis demonstrate a clear need to optimise PFP management. This study aimed to inform care and intervention delivery by exploring patient experiences of the diagnosis and treatment of PFP using semi-structured interviews.

Section snippets

Design

A qualitative study using semi-structured interviews following the Standards for Reporting Qualitative Guidelines (SRQR) (O'Brien et al., 2014) was conducted.

Ethical approval

The Queen Mary Ethics of Research Committee granted approval (QMERC/2018/48,036). All participants confirmed eligibility and provided written informed consent prior to interview using Google Forms (Google Inc., California, USA).

Recruitment

A convenience sample of potential participants were recruited online via social media. Participants were eligible

Participants

37 participants volunteered for this study, with 14 failing to meet the eligibility criteria (sudden/traumatic onset symptoms = five, aged >40 = two, incorrect aggravating factors = one, yet to receive treatment = six). A further 11 participants did not respond to repeat invitations to interview. Twelve PwPFP, seven women and five men, with a mean age (26.5 ± 4.7) and symptom duration (43.3 months ± 42.3), living in England (eight), Europe (one) and North America (three), were interviewed

Discussion

This study aimed to inform care and intervention delivery for PwPFP by exploring experiences of diagnosis and treatment. An overarching narrative of participants’ desire for patient-centred care that meets their individual needs was identified. Three key themes were devised: the value of diagnosis, the need for tailored care; and the role of education.

Conclusion

The overarching narrative derived from three key themes was participants’ desire for clearly communicated, personalised care that meets their individual needs. Clinicians treating PwPFP should consider providing a diagnosis or explanation of the pain to avoid uncertainty and confusion regarding the cause of PFP. Individualised, tailored interventions should be prescribed to reduce the potential for variable outcomes. Clinicians should look to nurture a strong therapeutic alliance and provide

Funding

This study was part-funded by a Private Physiotherapy Education Foundation Scheme A2 Research Grant awarded to Dr Bradley Neal and Dr Simon Lack.

Ethical statement

This study was approved by the Queen Mary Ethics of Research Committee (QMERC/2018/48,036).

Declaration of competing interest

The authors have no financial disclosures or conflicts of interest to declare.

Acknowledgement

This study was part undertaken by Philip Barber in partial fulfilment of an MSc in Advanced Physiotherapy at the Department of Allied Health Professions and Midwifery, School of Health and Social Work, University of Hertfordshire.

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