Self-report measurement of pain & symptoms in palliative care patients: a comparison of verbal, visual and hand scoring methods in Sub-Saharan Africa
Abstract
Background
Despite
a high incidence of life-limiting disease, there is a deficit of
palliative care outcome evidence in sub-Saharan Africa. Providers of end
of life care call for appropriate measurement tools. The objective is
to compare four approaches to self-report pain and symptom measurement
among African palliative care patients completing the African Palliative
Care Association African Palliative Outcome Scale (APCA African POS).
Methods
Patients
were recruited from five services (4 in South Africa and 1 in Uganda).
Research nurses cross-sectionally administered POS pain and symptom
items in local languages. Both questions were scored from 0 to 5 using 4
methods: verbal rating, demonstrating the score using the hand (H),
selecting a face on a visual scale (F), and indicating a point on the
Jerrycan visual scale (J). H, F and J scores were correlated with verbal
scores as reference using Spearman’s rank and weighted Kappa. A Receiver Operating Characteristic (ROC) analysis was performed.
Results
315
patients participated (mean age 43.5 years, 69.8% female), 71.1% were
HIV positive and 35.6% had cancer, 49.2% lived in rural areas.
Spearman’s rank correlations for pain scores were: H: 0.879, F: 0.823,
J: 0.728 (all p < 0.001); for symptoms H: 0.876, F: 0.808, J: 0.721
(all p < 0.001). Weighted Kappa for pain was H: 0.798, F: 0.719 J:
0.548 and for symptoms: H: 0.818, F: 0.718, J: 0.571. There was lower
agreement between verbal and both hand and face scoring methods in the
Ugandan sample. Compared to the verbal scale the accuracy of predicting
high pain/symptoms was H > F > J (0.96–0.89) in ROC analysis.
Conclusions
Hands
and faces scoring methods correlate highly with verbal scoring. The
Jerrycan method had only moderate weighted Kappa. POS scores can be
reliably measured using hand or face score.
#YOLO and #YODO! by Monica Williams-Murphy, MD
Saturday, 16 Aug 2014 16:50
Dr.
Monica Williams-Murphy is a Board Certified Emergency Medicine
Physician, who practices in one of the largest emergency departments in
the United States at Huntsville Hospital. Through her writing and
speaking, she is devoted to transforming the end of life into a time of
peace, closure and healing. Media Page
I recently got back from an exciting vacation which included zip-lining and whitewater rafting. Repeatedly during this trip, my oldest daughter and I would encourage each other with the trendy term “#YOLO“-”you only live once,” before we did something that felt risky but adventurous. (No offense to my Hindu and Buddhist friends who might prefer another acronym such as “you only live as many times as you need to get it right”! #yolamtayntgir (Sorry…not terribly catchy guys!)
One morning on the vacation I got up to go jogging alone, high in the Rocky Mountains in bear country. I left my family a note as to my whereabouts and ended the note with “love you…YOLO!”
Well, the jog was successful in that I was not eaten by a bear (although my pace could not bear the classification “successful” by any stretch of the imagination).
But what if I had been eaten by a bear?
It would have likely been very painful for me but, as I later explained to my children, it could have been interesting for them. How many kids can say, “Yeah, my mom was eaten by a bear”?
#YODO! (“You only die once”!)
(Well, ok, my husband informed me that normal people do not think that being eaten by a bear is interesting. I’ll give him that one, but remember my ideas about what constitutes a good and acceptable death have been formed by over a decade of witnessing deaths of all kinds and I can think of worse ways to die.)
So back to my point- doesn’t an exotic cause of death have some positive value if one died while living out the motto #YOLO? How about if you died while living out your bucket list? Or simply died while doing something you loved? (See this blog!) Or even died in the place you call home, in the loving presence of your family, friends and favorite cat? I will take any of those as a “good death” and a fulfillment of the #YODO challenge- which implies that one should strive to have a death that is honorable and worthy of a life well-lived.
Now in contrast, where is the dignity, honor or even intrigue of lying incapacitated in one’s own poop and pee for years before the arrival of one’s mortality? Definitely not a fulfillment of the intended spirit of #YODO and indeed for those whom I have cared for in such a state, I always have felt that we have created unnecessary suffering for them- I have even felt that it was dishonorable to keep them “alive” in such a manner. I have even felt that it was simply wrong.
Now you recall that I do not support euthanasia or physician assisted suicide, but I do believe that we should gain control over our dying by planning in advance for what kind of medical interventions we would or would not want at the end of our lives. And our planning goals should center on creating a “good death” for ourselves while balancing desires for quality and quantity of life.
So in the spirit of #YOLO and #YODO, I wish you a full life and an honorable, peaceful, or at least, interesting death.
Do you know someone whose life and/or death exemplified #YOLO or #YODO? Please share!
#YOLO and #YODO! by Monica Williams-Murphy, MD
Saturday, 16 Aug 2014 16:50
Dr.
Monica Williams-Murphy is a Board Certified Emergency Medicine
Physician, who practices in one of the largest emergency departments in
the United States at Huntsville Hospital. Through her writing and
speaking, she is devoted to transforming the end of life into a time of
peace, closure and healing. Media PageI recently got back from an exciting vacation which included zip-lining and whitewater rafting. Repeatedly during this trip, my oldest daughter and I would encourage each other with the trendy term “#YOLO“-”you only live once,” before we did something that felt risky but adventurous. (No offense to my Hindu and Buddhist friends who might prefer another acronym such as “you only live as many times as you need to get it right”! #yolamtayntgir (Sorry…not terribly catchy guys!)
One morning on the vacation I got up to go jogging alone, high in the Rocky Mountains in bear country. I left my family a note as to my whereabouts and ended the note with “love you…YOLO!”
Well, the jog was successful in that I was not eaten by a bear (although my pace could not bear the classification “successful” by any stretch of the imagination).
But what if I had been eaten by a bear?
It would have likely been very painful for me but, as I later explained to my children, it could have been interesting for them. How many kids can say, “Yeah, my mom was eaten by a bear”?
#YODO! (“You only die once”!)
(Well, ok, my husband informed me that normal people do not think that being eaten by a bear is interesting. I’ll give him that one, but remember my ideas about what constitutes a good and acceptable death have been formed by over a decade of witnessing deaths of all kinds and I can think of worse ways to die.)
So back to my point- doesn’t an exotic cause of death have some positive value if one died while living out the motto #YOLO? How about if you died while living out your bucket list? Or simply died while doing something you loved? (See this blog!) Or even died in the place you call home, in the loving presence of your family, friends and favorite cat? I will take any of those as a “good death” and a fulfillment of the #YODO challenge- which implies that one should strive to have a death that is honorable and worthy of a life well-lived.
Now in contrast, where is the dignity, honor or even intrigue of lying incapacitated in one’s own poop and pee for years before the arrival of one’s mortality? Definitely not a fulfillment of the intended spirit of #YODO and indeed for those whom I have cared for in such a state, I always have felt that we have created unnecessary suffering for them- I have even felt that it was dishonorable to keep them “alive” in such a manner. I have even felt that it was simply wrong.
Now you recall that I do not support euthanasia or physician assisted suicide, but I do believe that we should gain control over our dying by planning in advance for what kind of medical interventions we would or would not want at the end of our lives. And our planning goals should center on creating a “good death” for ourselves while balancing desires for quality and quantity of life.
So in the spirit of #YOLO and #YODO, I wish you a full life and an honorable, peaceful, or at least, interesting death.
Do you know someone whose life and/or death exemplified #YOLO or #YODO? Please share!
#YOLO and #YODO! by Monica Williams-Murphy, MD
Saturday, 16 Aug 2014 16:50
Dr.
Monica Williams-Murphy is a Board Certified Emergency Medicine
Physician, who practices in one of the largest emergency departments in
the United States at Huntsville Hospital. Through her writing and
speaking, she is devoted to transforming the end of life into a time of
peace, closure and healing. Media PageI recently got back from an exciting vacation which included zip-lining and whitewater rafting. Repeatedly during this trip, my oldest daughter and I would encourage each other with the trendy term “#YOLO“-”you only live once,” before we did something that felt risky but adventurous. (No offense to my Hindu and Buddhist friends who might prefer another acronym such as “you only live as many times as you need to get it right”! #yolamtayntgir (Sorry…not terribly catchy guys!)
One morning on the vacation I got up to go jogging alone, high in the Rocky Mountains in bear country. I left my family a note as to my whereabouts and ended the note with “love you…YOLO!”
Well, the jog was successful in that I was not eaten by a bear (although my pace could not bear the classification “successful” by any stretch of the imagination).
But what if I had been eaten by a bear?
It would have likely been very painful for me but, as I later explained to my children, it could have been interesting for them. How many kids can say, “Yeah, my mom was eaten by a bear”?
#YODO! (“You only die once”!)
(Well, ok, my husband informed me that normal people do not think that being eaten by a bear is interesting. I’ll give him that one, but remember my ideas about what constitutes a good and acceptable death have been formed by over a decade of witnessing deaths of all kinds and I can think of worse ways to die.)
So back to my point- doesn’t an exotic cause of death have some positive value if one died while living out the motto #YOLO? How about if you died while living out your bucket list? Or simply died while doing something you loved? (See this blog!) Or even died in the place you call home, in the loving presence of your family, friends and favorite cat? I will take any of those as a “good death” and a fulfillment of the #YODO challenge- which implies that one should strive to have a death that is honorable and worthy of a life well-lived.
Now in contrast, where is the dignity, honor or even intrigue of lying incapacitated in one’s own poop and pee for years before the arrival of one’s mortality? Definitely not a fulfillment of the intended spirit of #YODO and indeed for those whom I have cared for in such a state, I always have felt that we have created unnecessary suffering for them- I have even felt that it was dishonorable to keep them “alive” in such a manner. I have even felt that it was simply wrong.
Now you recall that I do not support euthanasia or physician assisted suicide, but I do believe that we should gain control over our dying by planning in advance for what kind of medical interventions we would or would not want at the end of our lives. And our planning goals should center on creating a “good death” for ourselves while balancing desires for quality and quantity of life.
So in the spirit of #YOLO and #YODO, I wish you a full life and an honorable, peaceful, or at least, interesting death.
Do you know someone whose life and/or death exemplified #YOLO or #YODO? Please share!
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