(The National Pain Report has been actively promoting a survey of chronic pain patients for over half a year which is now being used by Dr. Lewis in meetings with federal officials. If you haven’t yet filled it out, you may do so here.)
The instrument is steadily gaining respondents as conditions of care deteriorate. As of 2-24-2019, 3811 persons have responded since the survey instrument was opened in May 2018 in response to a call out for patient experience. Of these, 95% are persons with 6 or more progressive diseases involving multiple body systems, who experience pain that they characterize as intractable or always present. A large number of these conditions are classified as rare diseases for which there is not cure at present.
Every state is represented in the data. The majority of respondents are women who have been dealing with their diseases for a long time, some from birth, and many from childhood. The onset and progression of multiple disease and injuries is apparent in the descriptions about how their chronic pain generating conditions developed. In some cases, injurious treatment exposure increased their burden of disability.
We know that complex illness places a strain on family and personal resources for the long haul. A little more than 3% are care partners who can clearly elaborate upon the increased burden of care imposed by regulatory failure. Palliative care is largely unavailable to respondents in most states. Frequently, physicians fail to distinguish the difference between palliative care (which is designed to sustain and coordinate care) and hospice or end of life care coordination. A little more than 5% report that their combination of diseases will eventually require end of life hospice care coordination, with family members picking up the slack for chronic care across the interim.
The balance of reporters completed this instrument as helpers or people serving in the role of health care professional. People in the helping role describe their extreme frustration at having their hands tied by regulatory impediments that fail their patients and impair their ability to properly treat. A number of health care providers completed this instrument as members of the helping professions who are themselves dealing with chronic pain generation and disability on a daily basis.
In future reports, we will provide some preliminary results from the survey as we continue to promote the survey and encourage chronic pain patients, their family members, doctors, nurses, to lend their voice to this important effort.