More than a kidney disease: a patient-centred approach to improving care in autosomal dominant polycystic kidney disease.

Quality of life surveys in large observational studies such as DOPPS [1] have contributed significantly to our understanding of the impact of living with end-stage renal disease (ESRD). However, the impact of chronic kidney disease (CKD) on quality of life is less well understood. As the commonest hereditary renal disease, with clinical manifestations ranging from asymptomatic to severe progressive CKD, ESRD and death, autosomal dominant polycystic kidney disease (ADPKD) presents a complex but not unique challenge to clinicians. The systematic review by Tong and colleagues highlights the impact of symptoms on quality of life in ADPKD and the all too common gap between the experience of people living with the disease and the services and support available to them. This is compounded by the, until now, lack of a disease-specific treatment for ADPKD. The publication of the TEMPO 3:4 trial analysing tolvaptan treatment presents a promising development in research in the management of ADPKD. However, the continued imperative to develop treatments to retard disease progression should not make us lose sight of the need to better understand its clinical, psychological and social consequences. As a symptom, pain is frequently reported in ADPKD, yet as this and other surveys conducted by patient organizations show, whilst a significant proportion of patients suffer pain, many feel management of that pain is inadequate. A recent review of pain in ADPKD suggested a stepwise approach towards management [2], outlining the evidence and rationale for pharmacological, non-pharmacological and more invasive methods of pain control. This is both a timely reminder of the importance of symptom relief in a condition with no specific therapies, and a valuable starting point for a more holistic approach in which clinicians, patients and carers can act in partnership in decision-making about care. Whilst the evidence base on the ‘if ’ and ‘how’ of self-management of pain is mixed, there is some evidence from other conditions that empowering patients to move from being passive recipients to active participants in the management of their condition permits a more successful outcome [3]. Self-management interventions in arthritis care have been shown to improve pain and quality of life [4], whilst a meta-analysis of self-management education in children with asthma found improved lung function and fewer attendances to the emergency department [5]. In other areas of renal care, as well as in other chronic conditions, it has long been recognized that holistic care requires a broad, inclusive and multidisciplinary approach. The diversity of health beliefs, experiences, symptoms and consequences for those with ADPKD requires care approaches tailored to individual needs. Learning from what we already know is the first step towards a more patient-centred approach to care. Selfcare and self-management are central to the management of diabetes, and have also been used effectively in conditions as diverse as hypertension, heart failure and inflammatory bowel disease. A review of self-management strategies in 2011 identified provision of written information, support including care planning and follow-up, behaviour change coaching, and selfmonitoring as having evidence to support their use in a range of settings [6]. There are models of specialist multidisciplinary services in renal care—of note, conservative care for ESRD, transition clinics at the interface of paediatric and adult nephrology, multidisciplinary care in pregnancy and multisystem disorders such as lupus. The development of peer support programmes has also been shown to be a useful adjunct to traditional models of care [7]. In the UK, the new national guidelines for health emphasize the importance of patient-reported outcomes, quality of life and the experience of care as being at the heart of outcomes measurement [8]. National Voices, a coalition of health and social care charities in England, has launched ‘Person-centred Care 2010’, calling on the UK government to make person-centred care the central ambition for health reform [9]. In the USA, national standards exist for diabetes self-management, and the chronic disease