Introduction
HRQL in clinical settings and the encounter with construct pluralism
Opportunities for a common ground in HRQL theory
How do HRQL assessments compare with reports of persons with lived experience?
Core themes in standardized HRQL assessment

What persons with lived experience talk about when they talk about HRQL
Health-related quality of life themes and issues | Sample comments by persons with lived experience of chronic heart failure |
---|---|
Undesirable life changes: ability to pursue (individual or social) self-actualizing activities | • “Before HF I was dynamic, I used to run, to cook, but all of a sudden I had to stop” [40] • “…we don’t do activities together, pretty much across the board. …I think that’s probably been the hardest…appearing normal and knowing that I can’t do what everybody else can do, or what I should be able to do if I was a healthy version of me.” [41] |
Quest for existential support: evidenced by understanding and acceptance of self, or connection to greater purpose/reality | • “[Talking with a palliative care nurse] is significantly meaningful, both in regards to medicine and that stuff but also in how one understands…how should I put it…the whole thing.”[42] • “…any time that you go for a procedure or you have a serious illness or something like that you’d want the chaplain to come by and have a prayer with you that would help” [43] |
Uncertainty about the future: existential dread about the finiteness of life | • ‘Who knows how many days I have to live? …You live with this big question mark.’ [40] • “I always have something that reminds me that I am not well and makes me aware that anything can happen to me at any time...” [47] |
Loss of person: capacity to pursue a self-determined life that is valued as an expression of self | • “All the things I used to like doing, I’m no(t) able to do anymore.” [44] • “I want a life. I haven't got one, I haven't got one at all, so what can you do about that?” [45] |
Social isolation: loss of ability to connect with significant others | • “…there will be times, for example, (my family) won’t invite me to an event or something like that, thinking it’s too late, …[I] would be too tired…. Because they are super sensitive, sometimes they forget that sometimes we just want to be normal….” [41] • “I don’t meet people. The only people I see now is my carers. Otherwise I don’t see a soul. I don’t see anybody…..Oh very very lonely. Very very lonely”. [45] |
Vulnerability to acute distress or resignation: | • “…it’s there all the time – fear – em – ‘Am I going to die under the next one?’ I hope I get over this fear part – that’s the worst part” [46] • “…seeing myself in this situation and thinking that I can do almost nothing by myself makes me feel very overwhelmed” [47] |
Variability in the will to live | • “I feel that my usefulness on earth is finished now. I’m neither use nor ornament now really” [45] • “…living with CHF is horrible because all day long, I have the feeling of drowning, and that is very hard to bear…I would not mind leaving, right? Although I have never said it, sometimes I have thought about (gets emotional) even taking several boxes of medicines or throwing myself over a bridge…” [47] |
Perception that present life (and what is fundamentally valued in it) is precarious, and death inescapable | • “…I will not live for many more years. Therefore, I have no economic or material ambitions because of what I have left of my life…. …the only thing I want is to be able to live a few more years to be able to enjoy my family for a longer time (gets emotional). That is my only desire…" [47] • “You have to put the soul to rest because you don’t know when death arrives, if today or tomorrow.” [40] |
Acceptance: Affirmation of life as being meaningful and valued by fulfilling social roles or appreciating daily events | • “…I have a family, a daughter and a nephew, so I have to go on for them. Now I’m living the illness with patience and with the will to go on, and to go on with courage and strength” [40] • “…within seconds you can be on your way in an ambulance to the hospital. So you certainly appreciate the little things.” [41] |
We propose that this statement is complementary to Alexandrova’s definition of a mid-level theory [35]. To paraphrase, it refers to an appraisal of well-being or HRQL that is relativized as an expression of a given subject’s point of view about a particular person (self or other) within a specific social context. We suggest that the above process-based definition of HRQL refers to goal-directed activities that account for how HRQL appraisals become relativized by individuals, as they pursue a sense of “living well” within the parameters of their daily life. Further, we suggest that a process-based approach to HRQL is complementary to Mayo et al.’s definition [2]. But there remains a question of whether the philosophical theories that influence current definitions of HRQL, including hedonic, eudaimonic, or desire-satisfaction theories [31, 32, 34], are adequate to capture the dynamic nature of patient experience. In the space remaining we will discuss how we can address what’s missing within an organized theoretical framework.HRQL is an appraisal that evolves over time as it reflects and informs the self-regulatory process of adapting to dynamic changes in our health status.
A meta-philosophical approach to HRQL
HRQL and philosophy as a way of living
The Stoic approach to HRQL as euroia biou (good flow in life)
Congruence between stoic exercises and HRQL-associated processes
School | Prescribed exercises | Therapeutic goal | Health-related quality of life activity theme |
---|---|---|---|
Stoic, Epicurean | Meditation (memorisation and recollection of key principles) | Recollection & reorientation around fundamental values; reconnection with larger whole (contemplation) | Self-actualization, Connection with larger meaning |
Stoic | Applying dichotomy of control | Reducing negative emotion, reconnecting with fundamental values and priorities | Regulating emotion Self-actualization |
Stoic, Epicurean | Paying attention to thoughts, judgements | Promoting apatheia, ataraxia, absence of negative emotions | Regulating emotion Self-actualization |
Stoic | Daily premeditation of adversity | Preparation for difficulties, promoting ataraxia/apatheia | Regulating emotion Self-related health care |
Stoic, Epicurean | Meditation on mortality | Reconnecting with fundamental values and priorities, removing unnecessary fears | Self-actualization Connection with larger meaning |
Stoic | Nightly examination of conscience | Reconnecting with fundamental values and priorities | Self-actualization Connection with larger meaning |
Epicurean | Recollection of pleasures | Promoting stable pleasure, ataraxia | Regulating emotion, reducing distress |
Stoic | Reframing experiences (view from above) | Reducing negative emotions, overcoming adversities, reconnecting with larger whole | Regulating emotion, reducing distress Self-actualisation Connection with larger meaning |
Stoic | Training in endurance | Reducing negative emotions, preparing for adversities | Health-related self-care Physical vitality |
Stoic | Moderating emotions | Reducing negative emotions, promoting more stable positive states (apatheia, ataraxia) | Regulating emotions, reducing distress |
Stoic, Epicurean | Regular reading of inspirational texts | Reconnecting with fundamental values and larger whole | Education to promote well-being Self-actualisation |
Stoic | Writing, journaling | Recollection & reorientation around fundamental values, reconnection with larger whole (contemplation) | Self-actualization Connection with larger meaning |
Stoic | Fulfilling social duties | Reconnection with others, recollection of belonging in human community | Social affiliation Fulfilling social duties Connection to larger meaning |
Stoic, Epicurean | Friendship, relationship with counselor/teacher | Cultivating stable pleasures, affirmation of belonging and worth, examination of self and decisions | Social affiliation |