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.
Quality of life measures
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.