In striving for excellence in patient care via scientific means, clinicians may be omitting a potent source of relevant information-the patients themselves.
As noted in a previous dissertation1 of this publication, embracing healthcare quality assurance in Asian healthcare requires the commitment of all parties involved in the patient's hospital journey (Underwood 2006). It is incumbent upon the institutions to provide appropriate frameworks to facilitate data collection and analysis, and to support a culture of response to findings and continuous change toward improved safety and high quality outcomes. To this end, discipline-specific data registers can be established that include independent risk factors and summated risk scoring systems. Mortality along with the spectrum of secondary outcomes, will be incorporated and with relative ease it becomes possible to translate practice into quantified end points. This is crucial in providing transparency and accountability to patients, professionals and administrators and is the hallmark of excellence.
What is often missing in this evaluation of quality of care is the patient's voice. Throughout the hospital journey, opportunities exist to incorporate the patient as a source of report, information and opinion, and to include their preferences in decision-making. In some units, evaluating outcomes routinely includes patient-completed measures, so that functional and quality of life aspects can be incorporated into overall outcome analysis. In Asia, we have been slow to appreciate the benefits that accrue from patient feedback in aspects of care and assessment of efficacy.
Possibilities of input exist for the patient, right from admittance till discharge from hospital. Validated symptoms scores are the first level of patient input and summarise the reality of living with a particular set of problems. Information gained from patients about their symptoms can influence how doctors manage and prioritise their care. It can also affect a patient's compliance with medical recommendations and their satisfaction with treatment. The process of "being heard" may alter the path to recovery.
Until recently, the paradigm "Quality of life" (QoL) has been associated more with individuals facing life-threatening diseases than those with organic or treatable disorders (Gerharz 2003). QoL has now come to denote a general and holistic measure of well-being and disease impact (Wallander 2001). It is a validated way of measuring a patient's perspective of their life situation both before and after intervention (Donovan 2002). In adult patients such measures are obtained via self-completion of a psychometrically robust questionnaire.
QoL tools can be used as a potent summary of disease impact on an individual's well-being. Scores also serve as an outcome measure of symptom control following interventions, and may discriminate between treatment approaches. QoL results assist clinical decision-making by serving as surrogate end points in chronic disease when there may be only a small difference in symptom severity following treatment. In fact, QoL measures can detect greater change in patient status than the subjective report (Osoba 2003). Lastly, QoL data is commonly scrutinised in the substantiation of service provision or resource allocation.
Once hospitalised and undergoing treatment, the patient becomes a reliable source of clinically useful information that can facilitate doctor-patient communication. Including the patient enquiry "What matters" can augment the overriding clinical process driven by questions about symptoms. A recent study reported that one-half of cancer patients preferred to have a collaborative relationship with their doctor rather than play a passive role (Wilson 2000).
For a variety of reasons, face-to-face encounters between doctors and patients regularly fail to unmask the entirety of the patients' concerns. There may be discordance between how the patients and physicians view the presence and effect of individual symptoms (Wilson 2000). Consultation times are often short and patients experience stress during the course of disease. They feel reluctant to bother a doctor with apparently unrelated problems and present a positive effect in gratitude for treatment, and even respond to questions in ways they feel would most please the clinician. Patients expect and need clinicians to make decisions about their disease and both parties may resist diversion of attention to apparently non-medical issues. Aspects of care, such as QoL, threatening side effects of treatment or depressive or adjustment problems that are unrecognised and thus untreated, may compromise adherence to therapy (Fallowfield 2001). Alternatively, improvement in patients managed with explicit inclusion of their own reported outcomes i.e., collaborative care, is likely to be clinically meaningful (Velikova 2004).
Clinical care that comprehensively addresses both medical and key areas of the patient's well-being is associated with higher levels of patient satisfaction (Jackson 2005). Patients may be offered a disease-specific "happiness today" questionnaire on tablet or touch screen computers, where the results are available to doctors prior to reviewing the patient. Graphical representation facilitates single-occasion or longitudinal interpretation.
Patient's evaluation of medical care reflects performance of the system as whole, as well as specific aspects of advice and intervention (Hall 1988). It has been argued that satisfaction is a desirable outcome of healthcare in its own right (Donabedian 1988) and allowing "feedback" becomes an integral part of quality assurance and accountability (Redfern 1990). Satisfaction is also an indicator of patient acceptability of new forms of care or intervention and is frequently used as an outcome variable in trials (Koh 1994; Thompson 1990).
Aspects of in-hospital care that are important to patients are derived by them from their own values, experience, knowledge and expectations and may not be readily appreciated by doctors or fully explored in available metrics. However, since satisfied patients are more likely to follow planned care and make better use of health services institutions must find a way to understand the tenants underpinning satisfaction within their population (Fitzpatrick 1990).
Having decided to include the patient's voice in the evaluation of care outcomes, the next step is to identify valid and reliable measurement tools. Scrutiny of electronic databases reveals ever increasing number of patient-completed metrics, however, they are commonly reported in English and developed in Western countries. Concerns arise as to whether it is appropriate to use these tools within an Asian context and assume findings to be representative. One example of divergence in the same tool administered in either Chinese or English is reported by Cheung and colleagues (2004) who explored equivalence in cancer-specific, health-related quality-of-life questionnaires. Chinese translation of the question "I have a lack of energy" produced results that differed from the results generated by the original English version.
The adaptation of existing measures involves stages. Translation is the first step and necessitates a forward-backward procedure, independently carried out by two native-speakers of the target language or a professional translator (Kholler 2007).
Discrepancies are arbitrated by a third consultant and solutions are reached by consensus. Translated questionnaires then undergo a pilot-testing for conceptual appropriateness and wording acceptability. At this stage, ambiguities and cultural nuances are identified and corrected. Common problems include: lack of expressions for specific symptoms in various languages, the use of old-fashioned language, and different priorities of social issues between cultures (Kholler 2007). Table 1 summarises QoL measures in Asian languages.
If the measurement tool has already been reported extensively, it may not be necessary to re-examine its face validity and inter- and intra-reliability. However, within a new cultural context, it is mandatory to establish content validity. This process involves questionnaire completion by at least 200 local subjects, with a caregiver available to clarify individual difficulties. Complex statistical analysis follows to identify items that do not generate useful information within the local population. Problematic items within the original measurement tool are then either removed or modified before the tool can be used as a valid population-specific research or outcome measure.
WF Bower is an Assistant Professor and Surgical Audit Team Leader, Department of Surgery Chinese University of HK. Executive Board member of the International Continence Society and past executive of The International Children's Continence Society.
CSK Cheung is a Research Associate, Department of Surgery, joined Department of Surgery, The Chinese University of Hong Kong as Research Associate, participating and contributing work involving patient satisfaction initiatives across public hospitals and cardiac surgery registry.
CA Van Hasselt is a Professor of Surgery and Chairman, Department of Surgery Chinese University of Hong Kong, Prince of Wales Hospital, Professor of ENT Surgery.
MJ Underwood is a Professor and Chief, Division of Cardiothoracic Surgery, Chinese University of Hong Kong, previously Consultant Cardiac Surgeon and Audit Lead in Cardiac Surgery, Bristol Royal Infirmary, United Kingdom.
1Quality Assurance Programmes for Surgery - How and why in Asia? Published in Issue 12 (March '07) of Asian Hospital & Healthcare Management.