A review of the quality of life of adult patients treated with long-term parenteral nutrition

Summary

Background and aims

Some previous studies have assessed quality of life (QoL) in home parenteral nutrition (HPN) using generic instruments or non-validated questionnaires. A systematic search of electronic databases and relevant publications identified 50 publications. This paper reviews the QoL of patients receiving HPN and discusses the factors affecting QoL.

Results

There is little available data about the QoL of HPN patients. Both HPN and the underlying disease may affect QoL, and an evaluation of QoL requires the separation of these two issues.

Conclusions

There is a need for a standardised, scientifically validated, treatment-specific instrument to measure QoL in this population. The use of a treatment-specific QoL questionnaire should become part of the routine clinical management of HPN patients.

Introduction

HPN is provided to patients who are unable to absorb sufficient fluid or nutrients to sustain nutritional and fluid status. This treatment has allowed patients to lead as near normal life as possible and some have been able to return to work. Patients who are unable to meet nutritional and fluid requirements by the oral route may be provided with HPN.

HPN has an inevitable impact on the psychosocial function and quality of life (QoL) of the patients who require it and their families.1, 2 Previous studies have highlighted the difficulties faced by these patients in their every day lives in terms of work environment, financial status, independence and sense of ‘well being’. Many HPN patients can never eat or drink again without suffering severe pain or discomfort as a result. This inability to take food and drink affects the social life of many.³ Most social gatherings involve consumption of some food or drink and if patients are unable to participate, there may be reduced QoL.⁴ However, QoL can also in many ways be increased through HPN. It can become better by improving health status or through factors associated with the treatment itself.

Patients and/or their carers must be trained to manage this technology safely and effectively to prevent potentially life threatening catheter-related complications such as sepsis and thrombosis. Most are trained in hospital, requiring approximately two weeks to become competent.⁵ The alternative to HPN is either prolonged nutritional support in hospital, or discharge without nutritional support resulting in significant morbidity and probable death. Therefore HPN is the preferred option in terms of patient satisfaction and optimal use of healthcare resources. Moving the patient from hospital to home has been reported to result in QoL improvement.⁶

There are many definitions of QoL. In the context of health it describes health status from the patients’ perspective and has evolved from the need to estimate the impact of disease and treatment across the physical, physiological, social and somatic domains of functioning and well-being.⁷ Few studies report QoL measurements using validated instruments. It is important to discuss QoL by describing patient subjective experiences.

When we investigated the attitudes of clinicians to measuring QoL it appeared that there is a dichotomy when considering the reasons for providing HPN to patients with intestinal failure. The results of a questionnaire sent to HPN clinicians showed that the two aims of providing HPN are to keep alive, or to improve or maintain QoL.⁸ Clinicians recognised the need to measure QoL but have not resolved the problem of a lack of the means to identify the important QoL issues as perceived by patients.

The instruments used to assess QoL in these patients can be divided into two groups—generic health status questionnaires and disease-specific measures. We have previously reviewed the instruments that have been used in the published literature to assess the QoL of patients treated with HPN and showed the extent to which QoL is adequately assessed by the previous instruments used.⁹ It did not report on specific findings of previous studies, concurring with previous reviews10, 11 that no studies report QoL using validated instruments for this patient population. This current paper investigates the QoL findings of previous studies, focussing on the patients’ perspectives and their problems.