Shalom Srirangam pilot study found that people with acute urianry stone disease also suffered from a serious financial burden.
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Small Research Project – Final report – 21 January 2020
Little is known about the quality of life (QoL) and economic/financial impact on patients and their care givers following diagnosis of acute ureteric/kidney stone. We designed, undertook and completed a prospective pilot study at East Lancashire Hospitals NHS Trust (ELHT).
Methods:
Ethical committee approval was obtained in Dec 2016 and the study was also deemed eligible for adoption on the NIHR CRN portfolio thus providing us with research network support. This was a major boost for the project. The prospective study commenced on 27 February 2017 and closed to recruitment on 9 October 2018.
All patients presenting acutely to ELHT with a definitive CT diagnosis of a ureteric or renal stone and fulfilling the inclusion criteria were deemed suitable for the study. A member of the research team, usually the research nurse would approach the patient, explain the study, enquire about willingness to participate and then seek written consent.
All participants were followed up for a maximum of 12 weeks depending on whether they underwent definitive treatment to the stone or whether they experienced spontaneous stone passage. Participants were asked to record QoL data using two validated QoL questionnaires on a weekly basis (the EQ-5D-5L and the Cambridge ureteric stone PROM (CUSP) questionnaire). In addition, participants completed a bespoke patient diary for up to 12 weeks recording data including hospital/GP visits related to the stone, days off work, caregiver days off work and use of analgesia. All participants were provided a pack containing the questionnaires and patient diary and were instructed to complete all the forms as directed and return the data to the research team in an addressed, pre-paid envelope.
Over the 20-month study period 89 patients agreed to participate. The median age was 42 (19-84) years, with 65 male and 24 female participants. The mean size of the stone causing the admission was 5 (2-12) mm. With regards to employment demographics, the majority (65/89) were in either in full or part-time employment or full-time education.
The questionnaire (EQ-5D-5L and CUSP PROM) return rate was somewhat disappointing with only 30/89 (33.7%) returning the questionnaire pack. In addition, even when the questionnaire was returned, in a significant proportion of cases, the data was incompletely captured.
Nevertheless, analysis of the available EQ-5D-5L data confirmed that patients diagnosed with an acute stone suffered a rapid and significant decline in a wide range of QoL health scores. Though severe pain associated with the stone was the main presenting feature, the CUSP PROM data objectively demonstrated a significant negative impact on other health parameters including fatigue levels, ability to undertake normal activities, sleep patterns, anxiety levels and lower urinary tract symptoms. The QoL scores remained consistently poor till the participant experienced either spontaneous stone passage or definitive stone treatment.
QoL scores improved quicker and more significantly in patients experiencing spontaneous stone passage or primary/definitive stone treatment compared to those undergoing emergency stent insertion followed by a delayed secondary. This again provides further evidence that primary and definitive stone treatment at the time of acute presentation is better for patient reported outcome measure.
An interesting finding from our study was the significant number of unscheduled and/or scheduled hospital/GP visits made by the patient subsequent to the first presentation to hospital with the acute kidney stone. The mean number of visits was 3.4 (range 1-8) adding a significant burden to both primary and secondary health care services.
With regards to the indirect economic impact, acute kidney stone disease results in the sufferer having to unscheduled time off work. The mean number of unscheduled patient 'sick leave' was 35 days for those requiring intervention and 9 days for those managed conservatively for their kidney stones. In addition, patient’s caregiver also took 3 days off on average to provide support for the patient
There is clearly scant UK data on the QoL and indirect costs of acute stone disease. Acute stone disease results in a rapid deterioration in numerous QoL parameters, is associated with multiple unscheduled encounters with emergency health services, as well causing the sufferer and their care giver to take time off work. This pilot study has demonstrated the significant impact that acute stone disease has on the patient, their care giver, the NHS and the wider economy. The study also demonstrates that QoL recovery appears quicker in those undergoing primary/definitive treatment in favour of emergency stent insertion and delayed treatment.
One of the limitations of the current study includes the relatively low numbers of participants who returned the complete questionnaire pack. It is our intention that in the next phase of developing a larger multicentre study, there data collection method will need to less cumbersome and more engaging (e.g. via a smart phone app).
Finally, developing and completing this project has been a hugely rewarding and invaluable research experience. The data will be analysed further to draw out more specific patterns. An abstract summarising the findings has been submitted for consideration for presentation at BAUS AGM 2020 (a decision is awaited). Lessons learned from this project will essential in helping us develop a larger, multicentre study to help truly clarify the significant impact of acute kidney stone disease.
On behalf of the research team, I would wish to reiterate my thanks to The Urology Foundation for the financial grant and general support in completing this project.
