Patient Reported Outcome Measures

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Kelly Chennells | June 2019

Perhaps you’ve been involved in the healthcare arena and know the term “PROMs”? Perhaps you’ve heard the term but don’t know what it means? Even if you haven’t heard the term, it’s more likely to become more widely used as the implementation of NHI in South Africa draws nearer.

What are PROMs?

So, what are PROMs? Well, let’s start with defining PRO. Patient Reported Outcomes (PRO) can be defined as: “A PRO is directly reported by the patient without interpretation of the patient’s response by a clinician or anyone else and pertains to the patient’s health, quality of life, or functional status associated with health care or treatment.” (1)

PROMs are the instruments used to measure PROs (2). Patient Reported Outcome Measures (PROMs) are often self-completed, standardised questionnaires aimed at understanding how the patient perceives their health after an interaction with a health professional (3). These questionnaires perform the function of converting patient reported outcomes into quantitative scores (4). The PROMs questions are generally set on a numeric scale and scores are summed to determine an overall score per patient (3).

There are many examples of PROMs, some which ask questions around the patient’s perception of their health in general and others which are disease specific (3). Selecting the most appropriate PROM is crucial to creating meaningful data (3). PROMs are generally done before and after an interaction with the health system, so that the health professional can monitor any change in experience (5). PROMs can be done several times for a patient with a chronic illness over the life time of the illness, to measure the patient’s perception of the quality of care provided.

Value of PROMs

PROMs bring value for the entire health system – particularly for the patient, the healthcare provider and the interaction between these parties. The patient perspective has been minimised in traditional thinking around the health system, and PROMs creates a space for the incorporation of the patient voice into decision making and value-based payments. Incorporating the patient voice has the added benefit of improved patient quality of life. (1)

Social determinants of health

PROMs are useful to measure the patient’s own perception of their health before and after a healthcare intervention. Because PROMs are a measure of patient reported health, the socio-economic influences that exist in patients’ environment will naturally impact the patient-reported wellbeing.

For example, let us consider a chronically-ill asthmatic patient who experiences a health intervention and lives in an informal settlement. Assuming that this patient receives holistic, effective care; it is still conceivable that there could be instances in which this patient’s reported health outcomes deteriorates after the health intervention, driven not by the healthcare treatment but by the patient’s social environment. This person may have experienced more than usual smoke inhalation in their home or a lack of finances may prohibit their ability to purchase medication and/or take medication regularly.

In a study from the General Household Survey, it was found that 88% per cent of medical-scheme patients (private sector) reported being either “very satisfied” or “somewhat satisfied” as opposed to 83% of non-medical-scheme patients (public sector).  As reflected in the study, lower socioeconomic status patients had lower expectations of the health system. This therefore pushed their satisfaction scores upwards post treatment. (6)

Evidence of this is supported by trials such as was done in assessing the effects of socioeconomic status on the early outcome of total hip replacements in the UK. This was a study of 1 312 patients undergoing hip replacements. The study found that those most socially deprived did not achieve as good an improvement of symptoms and were not as satisfied as their less deprived counterparts. This poorer outcome was also associated with an increased risk of hip dislocation and mortality at 90 days. (7)

Taking into account such social determinants of health means that one needs to consider PROMs questions carefully and one may need to adjust questionnaires to account for differences in social health environments that may influence and confound patient health outcomes.

How are PREMs different from PROMs?

Patient-reported experience measures (PREMs) are tools and instruments that report patient satisfaction with a health service and are generic tools that are often used to capture the overall patient expe­rience of health care. PREMs are used in the wider population and in non-disease specific settings such as an outpatient department. Patient experience tools, for example, may be used to monitor patient feedback and focus on the general experience processes such as customer service rather than an experience related to a specific disease. (2)

Patient reported experiences through the use of PREMs, such as satisfaction scales, provide insight into the patients’ experience with their care or a health service. There is increasing international attention regarding the use of PREMs as a quality indicator of patient care and safety. (2)

Disease-specific v generic PROMs

There are two broad types of PROMs: disease specific and generic (5). For any particular investigation, usually both disease specific and generic PROMs are used to assess patient outcomes as they can provide complementary information (1).

Disease specific PROMs are tailored to the symptoms and impact a specific disease on a patient’s health outcomes. They often include clinical measures (e.g. blood pressure, serum cholesterol)  as well as outcome-related performance indicators (e.g. time to receive treatment variables, complications and adverse events) (1). There are thousands of condition-specific PROMs and generally they have greater face validity and credibility compared to the more generic PROMs. (5). The Oxford Hip Score, Oxford Knee Score and Aberdeen Varicose Vein Score are examples of disease specific PROMs questionnaires used in the UK (5).

Condition specific PROMs focus on a broader health condition as opposed to a specific disease. They use functional status and disability measure to assess the health of a particular population group such as the elderly or those with mental health problems. (1)

Generic PROMs focus on measuring single aspects of health (e.g. pain) or cover dimensions of health status. Multi-dimensional questionnaires usually include items on physical functioning, role functioning, psychological symptoms and pain. Some extend to additional areas such as sleep, social and sexual functioning. Recently, a new generic measure, the PROMIS (Patient-Reported Outcomes Measurement Information System) Global Health-10 scale has emerged. (1). These generic PROMs aid cost-effectiveness analysis to understand the cost of a health-related intervention and the ben­efit it generates in terms of the number of years lived in full health (2). The RAND 36-Item Short-Form General Health Survey (SF-36) is an example generic assessment used in the US  (5). The EuroQol 5-Dimension Self-Report Questionnaire (EQ5D) is a generic assessment used in England and Scotland  (5).

PROMs Challenges

Despite it’s positive responses by patients and healthcare providers, the implementation of PROMs has been slow in large-scale healthcare settings.  Some of the challenges to implementation of PROMs include the following:

The reality is that there are tight time constraints in the daily provision of healthcare and any tasks that aren’t essential will not be prioritized. Providers and patients would need to be convinced of the necessity and benefit of carrying out the PROMs questionnaires. (8) Linked to this operational challenge, is a challenge in achieving patient participation, particularly for patients with minor conditions or undergoing minor treatments. (5)

The timing for PROMs assessment is contentious as one needs to be able correctly to attribute it to that intervention: delaying follow-up ensures patients have gained all possible benefit but may undermine attribution to the intervention in question. (5)

Data and communication systems are needed to ensure that the PROMs results can be collected simply and accurately. (8) Casemix or other risk adjustments are required in order to ensure fair and accurate comparisons between providers. (1) Coupled with this are barriers for administrators and policy makers, which include the resources required to collect and manage the data and the potential for misuse and unintended consequences. (1)

Lastly, ensuring that analysis is done at the appropriate level is difficult. In countries with PROMs reporting, it is often at institutional level (e.g. hospital level) at present. While this may be appropriate for some interventions, the individual practitioner may be the correct level for other interventions, such as surgery. (5)

South Africa brings its own unique challenges to the introduction of PROMs. South Africa has eleven national languages, and as such the language of the patients would need to be considered. Online surveys that offer the option for surveys in all languages would be ideal.

The low-income setting of much of South African means that consideration and adjustment would need to be made for the impact of socio-economic circumstances of patients.

Additionally, due to high illiteracy rates in South Africa, some patients they will need to be assisted with completing questionnaires – introducing the possibility of bias of person administering the survey.

Bibliography

  1. Williams K, Sansoni J, Morris D, Grootemaat P, Thompson C. Patient-Reported Outcome Measures [Internet]. Patient reported outcome measures – literature review Australian Comission on Safety and Quality in Health Care. 2016. 7 p. Available from: http://content.wkhealth.com/linkback/openurl?sid=WKPTLP:landingpage&an=00124635-201611000-00001
  2. Smith S, Weldring T. Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs). Heal Serv Insights [Internet]. 2013;61. Available from: http://www.la-press.com/patient-reported-outcomes-pros-and-patient-reported-outcome-measures-p-article-a3810
  3. Dawson J, Doll H, Fitzpatrick R, Jenkinson C, Carr AJ. The routine use of patient reported outcome measures in healthcare settings. BMJ [Internet]. 2010 Jan;340(jan18 1):c186–c186. Available from: http://www.bmj.com/cgi/doi/10.1136/bmj.c186
  4. Wagle N. Implementing Patient-Reported Outcome Measures (PROMs) [Internet]. NEJM Catalyst. 2017 [cited 2018 Apr 11]. Available from: https://catalyst.nejm.org/implementing-proms-patient-reported-outcome-measures/
  5. Black N. Patient reported outcome measures could help transform healthcare. BMJ. 2013;346(7896).
  6. Ranchodi S, Adams C, Carvounesi A, Burger R, Smith A, Dreyer K, et al. South Africa’s hospital sector: old divisions and new developments. 2017. 101-110 p.
  7. Clement ND, Muzammil A, MacDonald D, Howie CR, Biant LC. Socioeconomic status affects the early outcome of total hip replacement. J Bone Joint Surg Br [Internet]. 2011;93–B(4):464–9. Available from: http://online.boneandjoint.org.uk/doi/10.1302/0301-620X.93B4.25717
  8. Basch E. Patient-Reported Outcomes — Harnessing Patients’ Voices to Improve Clinical Care. N Engl J Med [Internet]. 2017 Jan 12 [cited 2018 Apr 11];376(2):105–8. Available from: http://www.nejm.org/doi/10.1056/NEJMp1611252
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