Patient/Caregiver Symptom Perception

[Linda661]

With increasing amounts of care taking place in the home by family caregivers, it's important to know whether caregivers are able to accurately assess and communicate the symptoms (and their intensity) of the patient to medical professionals and hospice staff. How likely are we as caregivers to over- or under-estimate the distress that our loved one is in, especially when our loved one is in enough distress to not be able to adequately communicate for him or herself?

Well, research suggests that, specifically among lung cancer patients, caregivers tend to be highly accurate and in agreement with their patient. If caregivers err, they tend to overestimate the intensity of the symptom compared to what the patient says.

Caregivers tend to be more accurate on the physical symptoms and their severity rather than the psychological symptoms of their loved one -- interesting that this is the same for physician and nurse assessments compared to ratings of the patient.

To boost caregiver accuracy in reporting, the research suggests that accuracy improves when the caregiver imagines "being in the patient's shoes," when assessing symptoms, rather than imagining what it would be like if they themselves had cancer.

Considering that quality of life is definitely affected by symptom management in palliative/hospice care, it's encouraging to know that caregivers generally do a great job on behalf of their loved one and when they err, they err on the side of caution (but not to the extent of blatant over reaction that warrants having their concerns ignored by medical professionals).

References:

http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum

http://www.ncbi.nlm.nih.gov/entrez/quer ... s=10788942 -- these people did a two-phased study with the same conclusion.

http://www.ncbi.nlm.nih.gov/entrez/quer ... s=12177111

http://www.ncbi.nlm.nih.gov/entrez/quer ... s=16594433

http://www.ncbi.nlm.nih.gov/entrez/quer ... s=12660560

[teresag]

I think these studies point out the importance of hospice nurses teaching caregivers how to assess symptoms. Although the majority of studies support the accuracy overall of caregivers' symptom ratings, there is still enough error, esp. in psychological and other "less visible" symptoms, to cause symptom undertreatment or overtreatment.

I think it would be interesting to study whether the qualtiy of the relationship between the caregiver and the patient makes a difference. I suspect people who know each other very well, e.g. long-term spouses, provide more accurate symptom ratings.

Thanks for posting these.

[Linda661]

You're absolutely correct Theresa. Most of the hospice instruction appears to be needed in physical symptom severity from what I can tell so far -- I'd encourage caregivers to just plain ask for that instruction from the hospice team. Knowing that kind of thing could sure help decrease the worry and stress of the caregiver (it would have me, anyway), especially when it comes to monitoring and the administration of pain medications if any part of the instruction is "as needed."

Caregivers do not do well on the psychological aspects, but neither do the nurses or physicians from what I've found so far -- they did find the imaging technique I mentioned to help (I think I lost that reference link in here though).

Quality of relationship is definitely a factor as well. I ran across a study on that, but just ran out of time for now to follow that thread and see what I could find. Family vs. hired home caregiver is another interesting thought I'd like to follow as well.